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Breast Cancer Research Foundation

This October, I wanted to begin with a throwback conversation to honor those who began what we now recognize as Breast Cancer Awareness Month. In my world, the more people you have helped the bigger the celebrity you are. So two years ago when I had the privilege to talk to Myra Biblowit, the President and CEO of the Breast Cancer Research Foundation (BCRF) I was everything you would be when meeting your hero…nervous, anxious, excited, and truly thrilled to share her remarkable journey to change the lives of millions of women around the globe.

Our conversation was timely because just two days before we spoke, a friend of mine had a mastectomy. Myra was beyond lovely, compassionate, soulful, and truly inspirational in her commitment to prevent and cure breast cancer (the second most common cancer) by advancing the world’s most promising research. Although October is Breast Cancer Awareness month, this disease doesn’t care what day or month it is. Every 2 minutes a woman is diagnosed with breast cancer. Myra, her team, and a remarkable group of people are all changing the game and after our conversation, I can see that cancer doesn’t stand a chance with this beautiful lady starring it down.

Charity Matters: Tell us a little about what BCRF does?

Myra Biblowit: We want to put an end to breast cancer and our goal is to have no more fear, no more hospital visits, no more side effects, no more needless suffering, and no more loved ones lost to breast cancer and the only way to achieve our goal to prevent and cure breast cancer is through research. 

Charity Matters: What was the moment that The Breast Cancer Research Foundation began?

Myra Biblowit: BCRF started in 1993 but I met Evelyn Lauder in 1985 and we forged an incredible friendship. Evelyn called me and said that she had an idea to create a foundation that focused on breast cancer research after seeing the pace at which breast cancer research was moving. Evelyn had looked around the country and there was not one organization that was doing research with a laser-sharp focus.  Evelyn said, “I can do this and if I can do it and I don’t it, it would be a sin. Will you help me?” Evelyn had a soul and a heart that was enormous. She was working on the pink ribbon symbol and knew she could make this an ubiquitous symbol of the cause and get this issue out of the closet.

The story doesn’t end with creating awareness, it extends to harnessing dollars towards research to change the future. I told Evelyn, I would help her find an Executive Director and help her get BCRF off the ground. I was working at the Museum of Natural History at the time. In 1993, BCRF began at Evelyn Lauder’s kitchen table with our dear friend Dr. Larry Norton of Memorial Sloan Kettering Cancer Center.  Seven years later when I was working at NYU, I had had a few job opportunities arise and I reached out to Evelyn and Leonard Lauder for their advice as friends and Evelyn said, “Well this is a slam dunk, this is bashert (Yiddish for meant to be)….last night the Executive Director told us she wanted to stop working.”

By Monday, I was the President of BCRF. Evelyn gave up the Presidency and became Chairman and Founder and I went to work for my darling friend. I started April 1st, 2001, and I told her I would take the organization international, I would raise a lot more money and I would create a strategic thoughtful grant program to ensure that the dollars we are raising are wisely meeting the organization’s targets.

Charity Matters: What fuels you to keep doing this work?

Myra Biblowit: We lost Evelyn in 2011, and I do what I do in her memory and in her honor. BCRF is her legacy and I work hard to make sure that we are the gold standard. Our work stands as a tribute to her vision. Today we are the largest global funder of breast cancer research. We are the most highly rated breast cancer organization in the country. Evelyn had such vision and clairvoyance, breast cancer was in the closet when we started and thanks to pioneers like Evelyn breast cancer and women across the globe, it is out there now.

The dollars that we are investing at BCRF are not only answering questions about breast cancer today but a multiplicity of other cancers as well. Evelyn would not have envisioned the relevance that BCRF would have.

Myra Biblowit and Dr. Larry Norton, photo credit Suzanne DeChillo

Charity Matters: When do you know you have made a difference?

Myra Biblowit: Since BCRF was founded there has been a 40% decline in breast cancer deaths worldwide. The proof is in the pudding and truly we can tell you that BCRF has had a role in every major break thru breast cancer prevention, diagnosis, treatment, and survivorship as well as an advancing knowledge about other metastatic diseases. 

When Evelyn and I were working together we were mainly talking about diagnosis and treatment. We knew then and know even more now that research is THE reason.  Today that continuum begins with prevention and extends with survivorship. The connector is that research is THE reason, it is the glue.

Charity Matters: Tell us what success you have had at BCRF?

Myra Biblowit: I think it is important for people to know that breast cancer is rapidly transitioning to a manageable chronic disease. People need to not be fearful of the stories of the past from their mothers and grandmothers. Treatments are much more targeted. When a woman is diagnosed today they can try to find what type of tumor she has and then find the right treatment for that tumor type, which is huge.

We now know that breast cancer is not one disease but made up of four or five different diseases in terms of tumor types and each one has more in common with other forms of cancer than with each other. Today’s treatment has a far greater likelihood of success and they are far less toxic.

One study that BCRF was involved with was the TAILORx, a major multi-year and multi-country study to determine what women needed chemo who had early-stage estrogen-positive breast cancer. We knew women who had a high score needed chemo and women who had a low score did not need it. We didn’t know for the 70,000-100,000 women in the middle range if they needed chemo or not. Today we now know that those women do NOT need chemotherapy.  This study proved the power of research. These are the advances that change the future for our mothers, our daughters, and our friends.

Charity Matters: What is your vision for the Breast Cancer Research Foundation going forward?

Myra Biblowit: In the current year we raised $80 million dollars and we awarded grants of $63 million dollars to over 300 researchers across 14 countries. We could have funded more had we had more funds. We are one of the few engines that give resources to cutting edge researchers. We are the engine that tells researchers to take that chance. We are a rare funder in our flex-ability taking research down the path of greatest opportunity because the stakes are so high.

We devoted a fund to metastatic disease when Evelyn died by creating a Founder’s Fund. We want to use that fund to find more about metastatic disease, we want to invest in young researchers, and the more dollars we can give to our researchers the more breakthroughs we can make.

Charity Matters: What life lessons have you learned from this experience? How has this journey changed you?

Myra Biblowit: You know Evelyn gave me an opportunity to do something professionally that touches people’s lives profoundly. How lucky am I? Evelyn was grateful for everything that came her way. She was a child of the Holocaust and her family fled when she was an infant. Everything that she and Leonard achieved was a partnership. She was magnetic and wonderful and when we lost her, Leonard stepped in. I am filled with gratitude every day and for the opportunity to learn from the extraordinary Lauder family. What fed their soul was to make the world a better place and it was infectious. 

 

Charity Matters

 

 

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Claire Marie Foundation

Growing up in LA, Marianne Banister was a familiar face on daily on our local ABC news station. She was always reporting from a storm, a flood, a fire…some sort of disaster. When a friend suggested that I reach out to interview Marianne, who now lives in Baltimore, I was a bit intimidated. Marianne and her husband lost their 17-year-old daughter Claire to melanoma.

Their family was determined to fulfill  Claire’s vision to provide clarity and hope in the fight against adolescent and young adult melanoma through their work at the Claire Marie Foundation. They are on a mission to ensure awareness, education, and prevention of cancer that has increased 250% in the last forty years.

Charity Matters: Tell us a little about what THE Claire Marie Foundation does?

Marianne Banister Wagonhurst: When this happened to our family, to our daughter, Claire, we were blindsided. And because even the medical profession did not realize kids could get melanoma at this age. It looked different than adult melanoma and it was more aggressive and more invasive. according to pediatricians. Melanoma is the number two, cancer in adolescence from 10 to 19 and the number one cancer in young adults from 20 to 29. This cancer is the number one cause of cancer death and young women 25 to 30. In young people, this disease is more aggressive and invasive than in older people.

We’re the only nonprofit in the country that focuses on preventing melanoma specifically in adolescents and young adults. We are not trying to treat it and we’re not doing research to find an answer to find the new drug or the therapy. Please, I pray to God we find that tomorrow.  Nobody’s helping to prevent it and that’s our job.

CMF Five Year Retrospective 2019 from Claire Marie Foundation on Vimeo.

Charity Matters: Can you tell us what the risk factors of Melanoma are?

Marianne Banister Wagonhurst:  If you wear sunscreen if you wear up 50 SPF clothing if you don’t go to a tanning booth and if you advocate for yourself. That’s it, then you’re good. I want to add empower yourself to advocate and get at the front of it. Our whole goal is to get people in and connect them with a dermatologist. If you don’t already have a patient relationship with a dermatologist, it can take three to five months to get your first appointment. 

Charity Matters: Can you share some of Claire’s Journey?

Marianne Banister WagonhurstClaire got a routine skin exam at 13, it was November. We had them checked every year, no history in the family, just having lived in Southern California being a reporter being aware of it. We go back in June for her yearly exam and about a week before that the mole on her ankle that she was born with started to change. But it didn’t look like what we’re educated to look at for melanoma. It wasn’t thick, it wasn’t dark. The borders were not irregular, none of that it just looked a little dusty gray in color.

Claire kept it very quiet and to herself because she didn’t want to be put on a shelf with her friends. She didn’t want to have gossip and didn’t want to engage. Claire wanted to deal with it and went out and lived her life. We were very fortunate to live where we do, where we had renowned medical support 10 minutes away.

About her junior year when we thought we were well past it, her oncologist, Dr. Sharma asked her if she would mentor another young girl who had come in the month that Claire was diagnosed.  As we were discussing his request for her to help this other young person coming through it. She said, “Mom, why do you think this happened to us?”

I said, “Maybe being who you are because you’re so positive and energized. And being what I do professionally, you know, maybe we can do this together when you’re ready?” Claire said, “Yeah, when I’m a senior, then it won’t matter. And I can tell people, and I can advocate.”  She still was not quite there yet wanting to share her story. So we knew down the road, that’s what she would want to do. The bottom line is I just couldn’t sit here with this information and not warn other parents. If someone had raised the flag of awareness before us, then maybe she’d still be here.

Charity Matters: What was the moment you knew you needed to act and start Claire Marie Foundation?

Marianne Banister Wagonhurst:  We started with community support. We got launched in October 2014, it will be six years ago this month. Claire’s friends from her school wanted to help and do something.  One of her best buddies since childhood called me and said,” Hey, Miss Marion, do you have a logo?” And I was like, Why? I mean, we knew we were going to do something, but we are just trying to get through the grief and to deal with things.

Claire’s friends did this dance a THON and raised $24,000 called Moves for Claire. I didn’t know how many people my daughter knew. And then friends of other friends and her story carried. There were 500 kids there. And they had sponsorships, and I mean, they went all out. We realized they’re listening and paying attention now. So we need to take advantage of this. If we want to do this in her memory, we have to do it while they want to engage. And they have been our biggest force.

So through them, we then went forward, we have collegiate ambassadors, and they started the program for so they were in the high school class of 2015, college class of 2019. We’ve had just short of 100 kids on 46 campuses. And they do peer to peer education and mentoring and awareness programs.

My husband cycled 620 miles to symbolically take her to college. Claire was accepted to college just a couple of days before she passed. So she got accepted to Georgia, Southern University, Alabama. So he cycled from Charleston to Georgia Southern into Bama. We did this big media raising campaign and because it was a football game that she promised her dad he could go with her. So you know, it was a way of him to process it and honor her, but it was a way for us to raise awareness. We started doing that and running fast.

The kids came up with a lot of these ideas,  they’re all young adults now. We have partnerships since with US lacrosse and we work with the Melanoma Research Foundation, as one of their advocacy partners. We go to Capitol Hill and campaign for funding and support for research. We are developing a relationship and a partnership with Teen Cancer America out in LA. we want to bring our screening program out there, if a young person is going through cancer, guess what that puts you at elevated risk for melanoma.

Charity Matters: What are your biggest challenges?

Marianne Banister Wagonhurst: The biggest challenge for all this is that we’re the only ones out here doing it. We’ve screened 1000 young people, we found 16% have A typical moles that need a biopsy. Funding is still a big issue. We could use a staff of two full people, two full-time people. You know, it’s just me and my husband and the volunteers that pop in and out and help us out.

Secondly is getting our information out there. Awareness education, like this event we’re doing October 3rd, we always try to reach young people in the way that they’ll hear us.  It’s a two-hour Music Festival, with performers from LA Nashville, Baltimore, and Charleston. It’s really it’s a lot of fun. Then of course within that, we’ll have the melanoma prevention messaging built within it.

Charity Matters: What fuels you to keep doing this work?

Marianne Banister Wagonhurst:  Claire. There’s never anything that’s going to make it right that we lost her. There’s never any sense to it. But I truly believe this is her purpose. And if I don’t keep this foundation going and do the work that needs to be done, and I’m not fulfilling her purpose, and we would have lost her for no reason.

When people ask me how many children do you have, although it will be followed by an awkward moment. I just say well, I have two girls, one watches out for me from heaven and the other one is with me here.  I’m not going to say only have one daughter, that’s not going to happen because she existed and she had a purpose. She has changed lives and she has saved lives. We have had a number of young people who have found melanomas early and they always tell me,” You know, I thought of Claire, and I went and got it checked and it was a melanoma.”

Charity Matters: When do you know you have made a difference?

Marianne Banister Wagonhurst: My husband always says if we save one kid, we’ve done our work. And we’ve done that many times over. I think what I’m most proud of is we’re changing the narrative. We’re changing the focus, Claire was overlooked, she was a victim of the system. The system is not broken, but it needs to be tweaked.

Because of us, many organizations are now creating a Young Adult adolescent melanoma focus, in terms of research, and in terms of treatment and support. I know specifically within the melanoma world, we’ve changed that narrative. I think that is what I am most proud of in six years, we’re starting conversations, and making people understand that it’s just not a matter of putting on sunscreen, and calling it a day.  I think it’s changing the narrative of the conversation and elevating the importance and value that young people are getting this disease to the rate they are and that it is not rare.

Charity Matters: If you could dream any dream for your organization, what would that be?

Marianne Banister Wagonhurst:  The dream would be that every young person from two-years-old on should incorporate full-body dermoscopy-based skin screenings every year, as part of their WellCare. When they go to their pediatrician and their eye doctor and their dentist, they see the dermatologist, they get checked, that becomes part of their routine.

 We just don’t want anybody else to go through what we did, because it’s so darn preventable. When you think about it, melanoma is one of the cancers that you have the best odds of seen visually externally on your body. And a screening takes 10 minutes, and you don’t have to drink anything, and you don’t have to get an MRI and you don’t have to get a CAT scan, you just go in a robe, 10 minutes, a dermatologist with a scope. So we just need to it’s a system that’s broken, it needs to be readapted so that would be my dream.

Charity Matters: How has this journey changed you?

Marianne Banister Wagonhurst: I think one of the changes that surprised me is you get a different identity, you realize that life is you cannot go back to life as it was because it’s no longer there. So you have to recreate yourself. I’m in a different world.  So I’ve expanded the people in my life.

 I’ve had a lot of loss in my life and I’ve always lived my life as you have to thoroughly embrace it each day as it is. My faith is stronger than ever because I know she’s fine. I know she’s okay. I absolutely know because I’m telling you as smart as I like to think I am. I am not that brilliant.

This foundation has a life of its own. And as my older daughter says,” Claire will be done with it when she’s tired of Claire show.” Until then, it’ll just keep happening things that just drop in our lap. Opportunities that come up or people we meet that just really like jumpstart us into a new phase. And it’s just like, okay, she’s not done with the Claire show just yet. 

Charity Matters: What life lessons have you learned from this experience?

Marianne Banister Wagonhurst: We’ve been asked this by other parents often how we dealt with the grief. We just had to dig down to this just horrendous feeling and we had to feel but then able to come out the other side. And it seems like to me that at some point of grief you have to process this pain. I think for me because I always remembered that conversation we had about Claire helping others, I know she would be proud of this.  

It’s not that you ever want this to happen, but if it does, to know that something has been inspired by her in a positive way. That’s what we look at.  There was nothing she could have done to control this or affect it and so when that happens, it’s kind of like well, what do we do with this now? Our daughter is having a great impact because of what we’re doing and that’s the best we can do for those we love.

 

 

CHARITY MATTERS.

 

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Our Wave

I have to confess that I have a love-hate relationship with technology. I love being able to share these stories with you every week and I do not always care for some of the social media platforms needed to broadcast this work. However, when I heard about the nonprofit, Our Wave, and their commitment to use technology to build a community of people affected by sexual violence I needed to know more. It is an uncomfortable topic for sure but when you hear the amazing and inspiring stories of these founders, it is truly a story of hope.

Charity Matters: Tell us a little about what Our Wave does?

Kyle Linton: We really started Our Wave in 2018 with the idea that we wanted to better support survivors of sexual trauma and give them a mechanism to anonymously share their stories.  What we found was that there are all these opportunities for people to share their stories, which are incredible, but they’re very public.  Survivors wanted to see other people’s stories, they wanted to share their own story, but they didn’t necessarily want to do so publicly.

Since we’re technology design people,  couldn’t we create a platform where people could share their stories anonymously, but more so than just sharing?  Could we try to lean into the healing components and leverage research to give people resources as they’re sharing their stories and finding the things that they need so that they can move past their previous instances of trauma? 

Laura Sinko:I had met Kyle at a sexual violence conference because unlike Kyle being tech and design, I am a nurse by training. I’m also a researcher. And so my research was in healing after sexual violence. When I was interviewing survivors, I noticed this gap where people were really longing for community and really longing for a place to really say their truth and also just process their truth. Because I think sometimes you keep it inside and you don’t really even know how to put words what happened.

So I had stumbled across them on a table and they were saying, we want to create this platform. And I was like, me too, but I have no skills and design or tech. I would say that the vision is really to help people tell their stories and then connect them to a community, help people learn from each other, what works for them and what doesn’t.

Charity Matters: What was the moment you knew you needed to act and start Our Wave?

Kyle Linton:  In October 2018, someone in my life, directly experienced sexual violence. Somebody that was very close with and,  for me, it was a really difficult period. Because I was trying to figure out a bunch of different things. I was like, how do I support this person? How do I help them?  And even as I’m feeling all of these things, I can’t even imagine what this other person is feeling who experienced it firsthand.

Then I realized that I am privileged enough that I have the opportunity and experience building companies and products. So I said, “Well, I have the capacity to do something here.” So, I kind of got this idea of, what if we could create a place where somebody like this person very close to me could go and see other survivors and get support and find healing resources?

I started just kind of pulling people from my life and in saying, “I would love your support on this. If you have time?”. Then we found Laura at a conference. I said, “let’s bring it all together into this thing that can help survivors, and then let’s try to scale it like crazy?”  So, that’s really where it started. 

Charity Matters: Was there a back story that led you to this type of work?

Laura Sinko: Unfortunately, being a woman on a college campus, I felt like it was happening to so many of my friends were experiencing these sexual violence experiences. So I got really interested in sexual violence since there are so many people in my life that were struggling to find healing. A lot of the work especially in medicine and nursing is focused on that deficit, like you have trauma, you have depression, anxiety, and there’s so little focus on the healing aspect.

I was getting my Ph.D. in nursing, smack in the middle of my program, when I had my own experience of sexual violence. It was interesting because being a quote-unquote, “expert”, right? You think oh, I’m an expert in healing after the violence. I’m gonna be set. I can do all these amazing things because I know what to do. I have all the tools and it’s different when it’s yourself. It’s a totally different beast.

And so that’s why, for me, it’s really important to really build that community because you can often feel like you’re all alone if you don’t get to share your story in some way. That is that moment when you know this isn’t okay. This just isn’t okay.

Charity Matters: What are your biggest challenges?

Kyle Linton:  I think the biggest challenge for anybody doing this kind of work is how do you stretch, you know, minimal resources to make the most impact?  The beautiful part about our organization is that because it is a technology platform, it has the potential for a massive scale. The trick for us is trying to support all these different populations and individuals who have these different levels of need.

Laura Sinko: For me, being the grant writer of the group, I think funding is our biggest challenge. I mean, it’d be nice for all the work that people are putting in if we could pay some of our staff for their work. And that’s not really me or Kyle, but the designers that are doing all of our content and all of these other people who are really putting in a lot of work. So that’s why my thing is the funding, it’s always about funding.

Charity Matters: What fuels you to keep doing this work?

Kyle Linton: I grew up in a household where my mom has run a nonprofit for 20 years maybe. She’s amazing. I grew up in a household that was comfortable and it gave me the opportunity to do impactful work.

 I’m incredibly thankful for growing up with that sort of motivation.  I was not encumbered with student debt and it gave me the opportunity to try to leverage my skills to help people. I’m in a position to do that, and a lot of people aren’t.

Laura Sinko: So for me, it really it truly is this the survivors.  I was a mental health nurse for a while I’m now a sexual assault nurse examiner. Over the past four years, I have met just countless amazing survivors who have given me the privilege of hearing their stories and hearing their struggle. Whenever I have to write a grant or something that feels really daunting, I have this ritual where I like will light a candle and remember why I am doing this.

 It’s like bringing the survivors in the room with me, the people that are counting on me to and our team to really push this forward. And I will also say that being a part of this team of eight completely volunteers, people that give their evenings to this work their weekends to this work. I think that is also incredibly important.  Not every team has that cohesion, but I think we do which was really helpful.

Charity Matters: When do you know you have made a difference?

Kyle Linton: One of those moments is we ended up developing a presentation that we shared with USA Gymnastics. Obviously, everybody’s depressed and seeing things that are going on and we were able to share seeing the silent signs of sexual abuse. I remember I was in the zoom call helping moderate and support and a survivor of Larry Nasser popped in.

That moment made it clear and sort of brought to life, all the things that we’ve heard and the ability to sort of support individuals who have gone through unbelievably traumatic and difficult things. That moment sort of just brought that to the forefront of our minds and was pretty incredible that we as a tiny nonprofit have the opportunity to potentially impact somebody like that.

Another moment for me was really, this campaign we have been doing with this Instagram account called Unapologetically Surviving.  It is an account that’s grown from 60,000 to like, 140,000. The account specifically talks about healing, supporting survivors, and just being a light at the end of the dark tunnel.

We did a partnership with them where our team takes these questions that survivors have.  And we’ve seen like 10,000 people liking some of these posts and engaging. It’s just crazy to see that a simple cold email that said, “Hey, we’d love to work together. Can we share some of our work with y’all?”  So it’s just been a very just beautiful example of the potential impact we have. 

Laura Sinko: It’s really been the FAQ Fridays. I think putting some questions that I kind of had when I first started experiencing these things, like, how do you manage triggers? Have you ever had that moment where you’re not really sure if it actually happened and you doubt your experience?  It’s like, we’re all looking for the same answers.  I think that participating in that has been really helpful to see really that we’re all are experiencing different things.

But there is some common thread between all of us, no matter how you feel. What we do is all about creating connections and community. That’s really the essence of what nonprofits do is bringing people together to help each other to solve something that’s at the core of what we do. So being able to build a big community like that in such a short time is so incredible.

Charity Matters: Tell us what success you have had? What has your impact been?

Kyle Linton:  I think that between the content and the platform that we have created we are somewhere between 100 and 200,000 survivors that we’ve been able to access and engage with and support in some capacity. Obviously, our aim is to increase that.  We’re lucky as a technology organization that the number one thing that we have to our advantages is that scale and that ability to very quickly expand our efforts and reach that many people.

Laura Sinko: I think with social media, specifically, the direct messages, I just pulled up one now because it made me feel so good. This person said,” I just wanted to say how grateful I am to have found your page. I’ve struggled with what happened to me. So I really like to say thank you. I know you don’t know me, but just existing You make me feel seen.” And I feel like that is just something that when you think of impact is so important. The thought of being seen when you feel so alone is what keeps me going. 

Charity Matters: If you could dream any dream for your organization, what would that be?

Kyle Linton:  My dream would be to have a full-time staff that can run it this all day every day.  We could increase our outreach efforts and scale this thing. Our vision really long term is what if we could create this online platform where I’m a survivor and I come to tell my story, and I could be at all kinds of different stages of my healing process.

Laura Sinko:  I think really, for me, it’s creating a place basically a virtual healing space. I think so often we rely on people to find their own therapist the battle with their own insurance and all of this is really important to healing. But I noticed more and more particularly young people they’re looking for things online they’re craving that online community for that self-exploration from home. So if there’s a way we could increase access to healing opportunities, I think that that would be my grand vision. 

Charity Matters: What life lessons have you learned from this experience?

Laura Sinko:  The main thing that I learned is that it’s possible to have an idea that you think fills a need and to and to go out and do it. I think for me, in the clinician role I noticed this gap and I was like,  I’m just a nurse, I can’t do this.  That is really important for to like, no matter who you are, or where you’re at if you have an idea and you think it feels a need, and it’s really going to help people, take a chance on yourself because I feel like you can do so much good for other people.

Kyle Linton: I think internally, it’s been incredible to see how people many people want to give back and contribute to helping other people. I think that’s been really surprising to me. I mean, even just outside of our core team, the number of volunteers that we have that come to us and say,” Hey, I’d love to get back and contribute in some way.  I just want to help.” It’s been, it’s been really inspiring to just see how much people want to contribute.

 I would say just from a purely like, execution, and team standpoint, it’s been really amazing to see what we can do with absolutely no resources and to figure out how to be scrappy and how to create something from absolutely nothing and to have it be so purely good. 

Charity Matters: How has this journey changed you?

Kyle Linton: I think for me, the biggest one would be understanding all of the different things that people experience at different points in their life. And then seeing how that impacts them in so many different ways that I could have never imagined really getting a much level deeper level understanding of trauma.

I think makes you more empathetic, thoughtful, and makes you want to listen to people more because this happens a lot more than you can imagine. And it affects people differently. So, really learning to be empathetic, to listen, and to understand has been really beneficial to me.

Laura Sinko:  I think for me, there’s like two things that it has helped. One is I think more internal and I think one is more external. For me, being a nurse, a teacher, researcher, I’ve been in mostly spaces where I’m holding someone else’s trauma. I try to really detach and it’s not about me, it’s about you. This opportunity has really allowed me to look inward in myself and think about if I’m going to be like leading this effort, I got to really do my own internal work to make sure I’m in the right place.  I’m telling everyone else being a survivor is not something you should be ashamed of. I have to practice what I preach here.

So the fact that I’m even like saying this, that it happened to me and it doesn’t make right weaker, it doesn’t make me any less competent. It doesn’t make me a worse researcher, a worse nurse. In fact, I think that there’s a myth that actually helps me understand in a serious way. So I think that piece for me personally has been really beautiful.

But on the other side, I think connecting with folks like Kyle, who maybe didn’t experience it himself, but have that drive to give back. I’ve just been shocked by the people who maybe haven’t had that in their own personal life in terms of direct harm, but still feel compelled to come forward and help. People say,  look for the helpers, but like seeing those wanting to help has really given me a lot of hope for the world. We do this for hope to help other people to move the world forward a little bit,  one person at a time. That’s why we’re here.

CHARITY MATTERS.

 

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Project Hope

Every day the news around the globe seems overwhelming. Where there is darkness, there is always hope. Never did I feel that sense of hope more than from my inspiring conversation with the CEO of Project HOPE, Rabih Torbay, earlier this week. When crises happen around the globe, hurricanes, floods, war, pandemics, Project HOPE is there. The news may tell you every night that the world is dark but I can guarantee you there is hope.

Charity Matters: Tell us a little about what Project Hope does?

Rabih Torbay: We play our role in making people’s lives a bit better. As you probably know, Project HOPE has been around since 1958. So we’re a little bit over 60 years old. And our focus has been mainly on training health workers. Because we believe that the solution isn’t the hand in the hands of the healthcare workers working all over the world, especially the first responders.

So when you go to any disaster area, or when you go to places in Africa, and you see who’s actually carrying the load is the health care workers. So we focused quite a bit on doing that through different interventions. disaster response is one of them whether it’s a hurricane or an earthquake or as We’re seeing now with COVID-19 as well.

We have doctors and nurses that are deploying that are helping other doctors and nurses that are training them. We’re sending supplies, we’re supporting them. We’re empowering those first responders on the ground to do a better job as much as possible. We also focus on infectious diseases, whether that’s HIV, tuberculosis, or COVID-19. We work at the community level because, at the end of the day, the communities have to own the problem. And our role is not to solve the problem for them, our role is actually to support them and empower them because they have the solutions.  We really take pride in, in terms of empowering and supporting those communities to solve those problems.

Charity Matters: Has Project Hope’s Strategy always been a community-based approach?

Rabih Torbay: It has been right from the beginning. You know, Project HOPE is people.  It’s people to people. That’s how we connect. And it has always been the community, it has always been the doctors and nurses on the ground. And for us, the last thing we want to do is replace them. Our job is to support them and working at the community level working at the clinic level, the hospital level.

We go and ask them, “What do you need? What kind of support do you need? How can we help you?” And that’s how we come in and help them whether it’s an infectious disease or chronic diseases, and maternal and child health, especially the newborn health, which is a focus for us. That’s, that’s what makes us different than that’s what makes us special.

The Back Story

Charity Matters: Tell us the journey that lead you to Project Hope and this Humanitiarn work?

Rabih Torbay: I wish I could say I planned it all but I didn’t. I’m a civil engineer by background. So I have no health, education, or health background. And I grew up in Lebanon during the Civil War. And after the Civil War ended, I ended up going to Sierra Leone in West Africa. Initially, the plan was to go for two weeks and I ended up you know, stretching that to nine years.

It was during the Civil War, and I was still doing construction work with my civil engineer. There was a cholera outbreak on an island. And somebody asked me if I would volunteer for their organization and represent them for a couple of weeks until they send a team. So I said, “Sure, I’ll help out, although I have no idea what I’m going to be doing because again, I’m not a health care person.”

And I ended up going to that island. We took a hand canoe with an outboard engine, it took us four hours in rough seas.  But we made it to the island. There are always those triggers that change people’s lives and this was mine. I got to the island which has about 10,000 people, very poor. They had one clinic and one nurse in that clinic. So I walked into the clinic and people were dying from the current outbreak. There was a sick baby by the door. The clinic had no roof, no windows. And frankly, the nurse was actually sleeping. He was drunk and sleeping.

So I walked in and I spoke to the nurse, and I asked him, I said, mean, people are dying. What are you doing? You’re sleeping and you could smell alcohol. And he looked at me said, I have no medicines. I have no medical supplies. I have no support. All I’m doing is seeing people die. What do you want me to do?

And for me, that was a wake-up call.  That baby was dead, the one that I saw at the entrance. So I went back, I went back to the Capitol and I said, “We have to do something.” With a little bit of money that I had, we bought some medicines, we bought some IV fluids, we bought some chlorine. And that’s when I used my engineering background to start coordinating the water and making it clean and we went back to that island.

And from when we went there, the first time there were about 100 people dying every day, within a week, it went down to two people, and within 10 days, there was no more death. Oh my god. And it showed me what a little smart investment could make in terms of an impact on people’s lives. So that’s an I never looked back. That was 1999. And I started doing this work. And yeah, it’s been, it’s been amazing ever since.

Charity Matters: What are your biggest challenges?

Rabih Torbay: I think one of the biggest challenge challenges is getting people to know what’s going on in the world. When people hear only bad news, they don’t react to the good news that’s going on. So one of our challenges is to bring what we’re doing in the field, whether it’s in Africa and Asia and Latin America, or here in the US, so they would know that there’s a lot of good still happening and that they can actually contribute to that they can do some of they can participate in some of that good.

And that’s why we’re holding the event on Wednesday (tonight). You know, to really bring what we’re doing in the field, to people’s minds to people’s eyes so they can see it and feel it and feel that this they can actually contribute to a good cause. Instead of you know, wallowing in the negativity that we have these days.

Charity Matters: How would you recommend people start getting involved?

Rabih Torbay: Sometimes we look at the problems around the world and it’s overwhelming and we think you know What can I do about it? You know, right, my $1, $5, one hundred dollars isn’t gonna make any difference with the huge problems that we’re facing. And the reality is everything counts every single penny, every single thought and action comes, even for people that cannot donate.

If they spread the word about, what Project HOPE is doing about the needs. And it’s not about us. It’s about the people that we’re helping, right. It’s about the women and the children that we’re serving. If people can spread the word or donate or volunteer, all of that has a huge impact. 

 We actually show them that the world cares about them. So we will present that hope that people need because at the end of the day if people have hope they can survive to the next day with the hope that something good is going to come. Right. And that’s what we do. So partnering with, with our donors, whether the $1 donor or the $100,000 donor, is actually what enables us to provide people with health care and hope, and hopefully a brighter future.

Beirut, Lebanon. Photo by Firas Atani for Project HOPE, 2020.

Charity Matters: What fuels you to keep doing this work?

Rabih Torbay: People always ask what keeps you going? I mean, it’s that human resilience that we underestimate the human resilience is amazing. Whether it’s the people that I saw in Beirut when I went and visited after the blast in Beirut, or in Sierra Leone, or Iraq or Afghanistan.

People’s resilience is what makes us work harder when you see them that they’ve got nothing, but they still have a smile on their face. And they’re pushing forward. They’re trying to make ends meet, they’re still trying to provide that gets the same way we want to provide of our kids, put them to schools, make sure they’re not sick. I mean, when you see How can you give up? How can you sit back and say, okay, I’ve done enough?

Beirut, Lebanon. Photo by Firas Atani for Project HOPE, 2020.

Charity Matters: When do you know you have made a difference?

Rabih Torbay: People think that we’re actually helping others when it’s very reciprocal. When you go to a place like Beirut during a blast, and you see the youth who came from all over the country to help clean up the streets, help pick up the pieces, volunteer, donate money, donate medicines, donate food, and they’ve got nothing themselves, but they brought whatever they can to help. I mean, how can you not fall in love with people like that?

People that are actually doing and it gives you an unbelievable sense of, you know, a humility.  They don’t need a hand up. Nobody wants a hand up.  People need a helping hand people and need to be able to help each other and help themselves with pride and with dignity. To be in a position where you could actually help them achieve that. It’s just amazing. It doesn’t get better than that.

Charity Matters: Tell us what success you have had? What has your impact been?

Rabih Torbay: How can you put a price on somebody’s life? You know, how can you monetize that? How can you say, life is worth $2? That’s life is worth $100,000. Right? You start looking at that. But that being said, donors want to make sure that their money is going to the right people, and that you’re maximizing the impact of that money, and the money’s not being wasted. And, and for us, it’s critical. We take that very seriously.

We work hard for every single cent that we get from our donors. And we appreciate every single sound because we want it we you know, every cent counts and it saves people’s lives.  And one of the most impactful things that we do is actually training. Now, think about the multiplying factor of the training of doctors. If you go in as a doctor and treat 10 patients, that’s fantastic. You’ve just saved 10 patients.

But if you go in as a doctor or as a nurse, and you treat five patients and you train one doctor, who in turn will actually everyday treat 50 to 100 patients, look at the impact of your money, and put the potential of those doctors and nurses will train other doctors and nurses. So the model is the biggest return on investment that anybody could ever have, especially when it comes to health care workers.

And for us, that’s why everything we do, whether it’s during a disaster response or a program that deals with maternal and child health, or tuberculosis or HIV, or diabetes, training of healthcare workers is critical. Because that is the one thing that we leave behind. You can build a clinic, it could get destroyed, right? You can provide medicines and medical supplies don’t get used and they run out. But when you train people, that knowledge stays behind. And it’s a permanent knowledge. And for us, that is the most impactful work that any organization can ever do.

Charity Matters: If you could dream any dream for your organization, what would that be?

Rabih Torbay:  I don’t think it’s going to be achieved in my lifetime. And I hope it does, which is that Project HOPE and other organizations like project top are no longer needed. Because that means the world is in a much better place. Now more realistic and immediate The dream for Project Hope is that we really reach more people.

When you ask about, you know, what keeps me up at night, obviously the safety of our staff,  the next disaster that’s coming, can we actually respond? Can we get the resources to respond to those disasters? Can we actually make sure that we deliver training and we deliver services during COVID-19? The one thing that always keeps me up at night is who we could have reached that we didn’t? 

Charity Matters: What life lessons have you learned from this experience?

Rabih Torbay:  You know, as an engineer, you want certainty about everything you do, right? You want to know everything before you make any decision, for me, one of the most important things that I’ve learned,
especially stepping away from my engineering world is taking risks.

Take a chance on people take a chance on people’s resilience, take a risk, do something that your gut tells you. It’s the right thing to do. And your brains tell you No, it’s not. Listen to your gut instinct much more than you listen to your brains all the time. And taking a chance on people and believing in people’s goodness goes a long, long way.

Beirut, Lebanon. Photo by Firas Atani for Project HOPE, 2020.

Charity Matters: How has this journey changed you?

Rabih Torbay:  I’m am a completely changed person from focusing on my company and making money to really focusing on how can we improve as a society. It is no longer about me, it’s no longer about my family. It’s always now about the entire society, how can we help each other?

And, you know, having grown up in Lebanon during the Civil War? I didn’t know that was in me because you grew up in a war and you always wanted somebody to help you. You always want somebody to stop the bomb, and you wanted somebody to make sure that you get food.  This was in me the whole time and I had no idea.

Suddenly, you know, it came back out. And I was like, look, it’s about people. It’s about that extra step. So for me, the one thing I choose is the fact that I can never get enough. I never stop. Whatever I can do. I want to do a little bit more. Some people think I’m crazy. Some people think I’m a workaholic. I just love it. And the second thing is, I love my job. I’m telling you doing seven years of engineering, I hated every second.

We’re all in this together. We’re all in this to help the next person and I’m forever grateful for Project HOPE to give me the support you need to actually work for such an organization. It’s just my dream come true.

 

CHARITY MATTERS.

 

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Gordie, a story worth retelling…again and again

Gordie's story

Last week took our youngest back to his college in Texas.  He attends a big college football school where pre-COVID weekends included tailgates, football games, and the obligatory fraternity parties. This year our son will be a Sophmore and will be on the other side of the fraternity rush. With so many students heading off to college and parents concerned about COVID and so much more this year.  I was reminded that the 16th year anniversary of Gordie Bailey’s death is coming up.  I typically don’t repost but I have shared his story every year. The lesson is invaluable and sadly, needs to be told over and over to each new generation of college students.

Loss

So often we do not make discoveries or connections until it is too late.  We do not realize the value of a friend until they have moved away.  We do not appreciate our children until they have left for college or do not know the value of one’s life until it has passed.

Why is it that we wait to make these connections? Why is our hindsight is so crystal clear and our day-to-day vision so clouded? This story is perhaps no different, however, the beauty of it lies in the ability to take that clear vision and create something that matters.

This month thousands of college freshmen have left home, and many are beginning the process of Rush as they look to make new homes away from home in sororities and fraternities across the country. That is exactly what Gordie Bailey did in September 2004, as an 18-year-old freshman at the University of Colorado at Boulder.

Gordie’s Story

Gordie, a fun-loving freshman who had been the Co-captain of his varsity high school football team, a drama star, a guitar player, and a walk-on at Boulder’s lacrosse team was adored by all. He pledged Chi Psi. On the evening of September 16th, Gordie and twenty-six other pledge brothers dressed in coats and ties for “bid night”, were taken blindfolded to the Arapaho Roosevelt National Forest. There they were “encouraged” to drink four “handles” of whiskey and six (1.5 liters) bottles of wine.

The pledges were told, “no one is leaving here until these are gone.” When the group returned to the Fraternity house, Gordie was visibly intoxicated and did not drink anymore. He was placed on a couch to “sleep it off” at approximately 11 pm. His brothers proceeded to write on his body in another fraternity ritual. Gordie was left to “sleep it off” for 10 hours before he was found dead the next morning, face down on the floor. No one had called for help, he was 18 years old.

Turning Grief into Hope

The nonprofit Gordie Foundation was founded in Dallas in 2004 by Gordie’s parents as a dedication to his memory. The Gordie foundation creates and distributes educational programs and materials to reduce hazardous drinking and hazing and promote peer intervention among young adults.  Their mission is committed to ensuring that Gordie’s story continues to impact students about the true risks of hazing and alcohol use.

There has been at least one university hazing death each year from 1969 to 2017 according to Franklin College journalism professor Hank Nuwer. Over 200 university deaths by hazing since 1839, with 40 deaths from 2007-2017 alone and alcohol poisoning is the biggest cause of death. As Gordie’s mother Leslie said, “Parents more than anything want their dead children to be remembered and for their lives to have mattered.”

In almost sixteen years, the Gordie Foundation which is now re-named Gordie.Org has made an enormous impact on hundreds of thousands of students across the country through its programs and educational efforts. If you have a college-age student, think about asking them to take the pledge to save a life, possibly their own.

Why is it that we wait to make these connections? Why is our hindsight is so crystal clear and our day-to-day vision so clouded? Why is it that we do not know the value of one’s life until it has passed? Perhaps more than a decade later, our vision is becoming clearer and we realize just how precious each life is……

Charity Matters.

 

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The Scarlet C of COVID

“It had the effect of a spell, taking her out of the ordinary relations with humanity, and inclosing her in a sphere by herself.”

The Scarlet Letter

My son and husband have COVID. By the time you read this “had” will be more apropos. Not to worry they are physically fine.  I am COVID free. They are only two of over four million people that have had this. The fascinating thing about COVID is not the physical ramifications but the mental. There is a Scarlet Letter C for COVID. For the first time in my life, I can relate to the character Hester Pryne from The Scarlet Letter. We have not hung a huge scarlet C in front of our house but it feels as if we might have one.

the Love-Hate Relationship with COVID Statistics

Every night for months the evening news covers the daily statistics of COVID. The number infected, tested, active cases, deaths, and the list goes on. These numbers are people. They are not numbers and there is a difference. At this writing, there have been over 140, 000 people in the United States who have died.   According to the LA Times, Floridians over 65 are dying every eight minutes, due to this horrific pandemic.

Before I begin my observations on the mental health of COVID, please note that I am in NO way stating in ANY way that being seriously ill or death is a comparison to the mental health aspects of this virus. It most obviously is not. What has been fascinating to observe is how people react and how people treat you when they know there is an active COVID case in your home.

The Human Experience and COVID

When you hear that people are all over the map with their thoughts about COVID. Pro-mask, Anti-masks, Pro-school-Anti-School. That is true. People are emotionally all over the place when it comes to COVID. Wherever you are on this is ok. I am not here to judge but here to tell you what this feels like on the receiving end. Every day for the past 12 days we have felt as if we are in the middle of a bad psychology experiment. When you tell someone your child has COVID and is safely quarantined (as are we) the reactions run the gamut. It doesn’t matter if is your family, dear friends, neighbors, or co-workers. I haven’t tried with strangers yet but maybe their reactions are better?

Our first encounter was with our neighbor who was walking his dog. My husband and I saw him from about thirty feet apart and we spoke telling him that our son has COVID. He literally ran away while suggesting a podcast for good information. His fear was real. Totally understandable but we have never had anyone run away from us before, so that was a first.

 

The Scarlet C

Dear friends have reacted with anger, shock, shamed us, questioned us, and rejected us. The anger, “How could you let your son go on a father-son boating trip in a pandemic? What did you expect would happen? You are an idiot!” For the record, every person on that trip has tested negative twice, so the source is still a mystery. Can you really get COVID from a gas pump? Think we know the answer.

Shock and awe.  Many friends are stunned and curious. Our son is the first person they have known and they have a million questions about exposure, symptoms, how we keep ourselves safe from him, quarantine, testing, and protocol. That is a whole different post on the misinformation of COVID that I will spare you all.

Shame and Shunned

To be told that we are not welcome regardless of testing, quarantine, following CDC, and doctor’s guidelines. Well, I have to admit, that one stung a bit. We have been very honest and open about the situation, obviously. Our medical advice has been excellent, all of which we have followed to the letter. Who knew that Zinc and a thousand milligrams of Vitamin C helps keep you COVID free?

However, being banned/shunned made me wonder if we actually had a Scarlet C on our home or our caller ID? It made me wonder about Hester Pyrene and truly understand how she felt. Just as the book said, “It had the effect of a spell, taking her out of the ordinary relations with humanity, and inclosing her in a sphere by herself.”  It is bad enough to be away from your other children, your family, friends, and the world for 14 days. It is not fun. It is sad, lonely, depressing, and isolating. That is for us that are “healthy” and without symptoms. I can’t imagine adding being severely ill to how people with COVID must feel?

Kindness and Compassion

To end on a positive note we have had more than a handful of amazing friends who offered to get groceries, run errands, or bring anything we needed. We had one friend drop off beautiful vegetables from her garden. One family has face-timed our son every night just to check in on him and it was honestly the highlight of his day. All of these gestures of kindness were THE best medicine. Feeling loved, connected, and cared for is what we all truly crave in life.

I have to confess that I struggled with sharing these observations.  Knowing that I am opening myself up to a million more opinions and emotions that honestly, I’m not sure I can handle after the past two weeks. However, with all of the overload of information out there I could not find anything about the human reaction to COVID. These are our experiences, perhaps not everyone’s. My hope is that when you know someone who is quarantined (and chances are you do) that you reach out with kindness, compassion, and empathy.

 

Charity Matters

 

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We Lift You Up

A few months ago before the world went mad, and in the early weeks of COVID, I had the opportunity to talk to Lisa McKenzie, the most extraordinary human. Lisa began her career as an events planner and entrepreneur. Life had a different plan for her. Lisa was running a company called Ooh La Bra when her life took a turn. Using all her gifts in business and event planning came this opportunity to make an enormous difference for women recovering from cancer. Lisa founded the We Lift You Up Fund with multiple programs to support women recovering from cancer. She is a true inspiration and a bright light in our crazy world.

Charity Matters: Tell us a little about what We Lift You Up Foundation does?

Lisa McKenzie: We create empowering group experiences for women with cancer. For a lot of women, the scary part is when they are released from the care of their physicians and friends think they are “cured.” The survivor feels like she came back from a war zone and she is still in the trenches.

Their bodies might be totally mutilated, or their relationships are severed, and now they’re living with the constant fear of recurrence. And then, of course, just the damage it does to a lot of families financially,  just to the family structure itself, the kids are scared, and so, we are that part that picks up from that point. Doctors and hospitals will refer the patients to us because they don’t have time to deal with the emotional struggle, right? So if they’re sitting in a waiting room with a woman, and she starts expressing any kind of fallout, they’ll say, call We Lift You Up and so our organization is comprised of all survivors, and by the way, I’m not one.

Get acquainted with You Night from You Night Events, LLC on Vimeo.

Charity Matters: Wow, that is so interesting. So What was the moment you knew you needed to act and start  We Lift You Up?

Lisa McKenzie: My mom is a cancer survivor but actually I have two friends who were the catalyst for all of this. So I was watching these two women who were movers and shakers in society completely confident, you know, going along with their lives and often they both got cancer and they totally changed, their physique changed, their confidence changed. Meanwhile, though, I had just come out of two years of total darkness because my marriage crumbled, my husband had cheated on me. And I went from this peppy person, a leader, confident and happy, and then all of a sudden I was dealing with clinical depression.

 Over time little resources, like the book The Power of Intention by Wayne Dyer started filling my mind with truth. I woke up one morning knowing that I didn’t want to feel miserable anymore. I had been a prisoner of my own mind and I began to find positive messages to retrain my mind and I began listening to podcasts and read books with positive messages

God still had a perfect story for me. I was running an accessory company and the tag line was, “We lift you up.” I wanted to do a runway show to model my product and I decided to use my friends who had had cancer and that was the beginning of You Night. After that first runway show, I approached the hospital and said I would love to gift this experience to cancer survivors. These survivors walked a runway in front of 500 people, their families, doctors, and nurses cheering them on. 

You’re like you’re cheering for these ladies, not because they have a pretty gown on or because their hair looks beautiful, right? They have fire in their eyes. That is like, you just you could feel it in the air. There’s so much energy coming from these ladies.  So it’s like a pay it forward program because in the audience are the women who are bald and defeated and thinking I’ll have whatever that runway model just had. 

Charity Matters: What are your biggest challenges?

Lisa McKenzie: I’ve always wondered why can’t people collaborate who are doing good things? Why does this happen?  When you offer something for free in emotional support sometimes we can end up with more than we can handle. If we are doing the best work we can to serve humanity then why are we judged for our overhead as nonprofits? My motivation is so pure, why would people question your intentions?  These challenges became the catalyst to stay in my lane and stay the course.

Charity Matters: What fuels you to keep doing this work?

Lisa McKenzie:  The women. I have actually heard women say, “I’m glad I got cancer so I can join this organization.” Oh my God, because they have learned things about themselves that would have never been possible. And one of them who had stage four cancer said, “I wasn’t giving myself permission to smile anymore because I’ve labeled myself as a stage four cancer survivor. I thought that that’s like my death sentence and my black cloud.” Now she said, because of us now she can smile. We provide opportunities for people to find their smile again and say, yes, you do still have permission to enjoy life. 

My other inspiration are the children who come to see their mother’s walk the runway. So there was this little girl she was probably eight years old and her mom is a mom of four really who was really sick,  like 70 tumors, and struggling. But this little girl followed her mom the whole way down the stage, and then followed her mom back. When she went home that night, she got this box and scissors and fabric and her Barbies. Her mom’s said, “What are you doing?” She said,” I want to design gowns for Barbies that make them feel as beautiful as you looked on stage.” Oh my god, the stories.

Charity Matters: When do you know you have made a difference?

Lisa McKenzie: I will tell you because there are endless stories of women’s lives we changed, like just to give you an example, a woman who calls and is suicidal and comes to the very first meeting and has her shoulders slumped and she’s got a chemo beanie on and she’s looking down at the ground. Then, slowly but surely you start seeing week after week and get together after get together, her posture changes. And then after she graduates, and after they get all this encouragement and attitude they want to go forward and be part of the organization. So I have 50 volunteer participant leaders who are all not on the payroll and are graduates of the program..

We sort of realized that our empowerment experience is a two year experience, the first year is giving them back their own self-esteem and their life and their attitude. And then pulling out you find out so many things about them like they’re amazing skills, and these are women are not defined by cancer.

Charity Matters: Tell us what success you have had and about your impact?

Lisa McKenzie: Give people a literal platform. We have done 14 runway shows in seven years with two classes of fifty women a year. The show is a huge celebration. We show photos from their worst moments and the most painful pictures of their journey. The storytelling allows them to be real and the oncologist says they can tell the difference between women who have been through You Night vs those who have not.

Charity Matters: If you could dream any dream for your organization, what would that be?

Lisa McKenzie: To have a women’s conference, Tony Robbins style and fill a stadium with cancer survivors. Scaling to grow the You Night runway to raise awareness for emotional care in survivorship.

Charity Matters: What life lessons have you learned from this experience?

Lisa McKenzie:  The first lesson is that I can leave a legacy for my daughter by showing her by example that you can use your talents and skills to help others. I can plant a seed of compassion in my children to carry on for generations.

The second lesson is that we live in one of the kindest worlds you can imagine. I can not believe how many really good people there are who want to help. I have never seen so much love and kindness back and forth between people. The love is the addiction. 

Charity Matters: How has this journey changed you?

Lisa McKenzie: I have learned to be more organic in how life unfolds. You can have a pity party and be at peace at the same time. I’m learning to let God unfold the story at his pace.

 

CHARITY MATTERS.

 

YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

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Faces In Between

There has been much conversation about the future of our country and the challenges that many of our young graduates are facing in these uncertain times. If ever there was a bright light that gives us all hope for humanity, it is Danielle Levin, the President, and refounder of Faces In Between. Danielle literally graduated from Columbia with her Masters in Public Health the day before our conversation last week. She is remarkable in what she has accomplished in 25 short years and I know the future is bright with compassionate leaders like Danielle changing our world through her inspiring work serving youth, families, and the homeless.

Charity Matters: Tell us a little about what Faces In Between does?

Danielle Levin: Faces in Between is a community outreach and support organization. We focus on developing different programs that increase the well being of our community members who are experiencing different forms of economic disadvantage. We primarily work with youth and families as well as youth who are experiencing homelessness. Sometimes there are overlaps between those, sometimes there’s not.

For our homeless outreach, we distribute care packages and we’re in New York City so in the winter that looks like sleeping bags, blankets, hats, gloves, scarves, and things like that. We have a speaker series where we bring individuals who are currently experiencing homelessness into different settings to share their own stories and advocate on behalf of themselves and their community. There’s nothing more powerful than hearing it directly from the source and being able to truly ask the questions that many of us have and don’t really know who to ask or where to go to find the answer.

We also have an after school program called SNACC, which stands versus Stainable Nutrition And Community Connection. It teaches economically disadvantaged youth how to prepare healthily, but affordable meals with items that are available in their local grocery stores. We bring different New York City chefs in to teach students and then we incorporate different social, emotional learning components into each session that we have. However, with COVID, we have not been able to run our programming as we had planned. So we pivoted what we do while keeping our mission exactly the same.

We have developed a COVID relief food program, and we are currently delivering daily meals to over 200 people. We are working with a local farm to table catering company who’s bringing boxes of food directly to the doors, the homes, the shelters of elementary age students and their families. So that’s been our new way of connecting with the community. We are in the process of launching a Chef’s Table page on our website. We’re having chefs send us in video recordings of themselves doing cooking demos for the kids. The chefs are going to show the students and their families how to create healthy and affordable meals with the ingredients provided in the boxes. So we’ve really been creative in our approach and are just trying to meet the community where they are. 

Charity Matters: You are 25 years old and have already accomplished so much, You literally graduated last week with your Master’s Degree in Public Health. have you always been philanthropic?

Danielle Levin:  I’ve always been someone that wanted to be a changemaker; I wanted to be an agent for change. I would spend my summers interning for refugee resettlement organization or running a health clinic and interning  for HIV AIDS facilities abroad. I just always knew that I wanted to do something to increase well being and to help people be able to live their best lives.

Homelessness and economic disadvantage have always been something that’s of particular interest to me. Especially focusing on youth because kids have so much to look forward to and so much potential.  When I moved to New York, I had the opportunity to just really get to know my neighbors who didn’t have homes. There are over 65,000 homeless individuals in New York City on any given night.  I had the opportunity to really understand, and to sit down on the street corners and talk with my neighbors who didn’t have homes, get to know what their needs were, learn their stories, and that’s kind of where the speaker series developed from. Also, all the items that we deliver aren’t because I think that they should be delivered, it’s because I know it from hearing directly from the source.

Charity Matters: Tell us how Faces In Between began?

Danielle Levin: It’s kind of an interesting story and series of events, and it’s all just so meant to be. In 2016, I was moving to New York, graduating undergrad, and I was going to work in a corporate healthcare job and wanted to really do something in my spare time working with homelessness and poverty. I came across this woman who had posted something online about how she started this organization called Faces in Between. Her name is Kendra and she filed the paperwork and set up the organization. She was a psychiatric ER doctor who worked around the clock and didn’t really have the opportunity to actually launch the organization in the way she had planned.

I reached out to her and she brought me onto the team. In 2018, I kinda said, Hey Kendra, nothing’s really happened with the organization in like a year and a half. She said, “Actually, I am going to shut it down. It’s not the right time.”  I said, well if it’s going to shut down now and fail now, why don’t I just take it over? I’ll rework it, I’ll rebuild it, I’ll flip it and keep the general mission exactly the same, but the approach to it will change. I thought it either fails with me, or doesn’t, but let’s see what happens. So she passed it over to me. And so I’m kind of like, the refounder.

 Kendra remains as my incredible mentor and she looks at what we’ve done with such pride. She had no idea that it would then turn into this and she’s watching it from afar and just seeing all the things that we’ve accomplished and the thousands of people that were touching daily. 

Charity Matters: What are your biggest challenges?

Danielle Levin: I think our biggest challenge is also our biggest strength, the challenge is that we are 100% volunteer-based. Every donor dollar goes directly to the community. I am a full-time volunteer for the organization. I think that it’s our biggest strength but it definitely poses challenges because we make decisions on maximizing community impact versus a business model. I think that it is something so special and I will keep this model for as long as I can. It’s working for us. Upon graduating I’m going to be working full time for another corporation so that I can maintain this model. I think that it’s our strength, but it’s a challenge to figure out how to maximize and how to stretch every dollar to make sure that it’s truly making a difference in the lives of our community. I think it’s also the most beautiful part and it’s what makes us us. 

Charity Matters: What fuels you to keep doing this work?

Danielle Levin: I have so much passion for the work that I do that I don’t mind late nights and early mornings and weekends. For me, it doesn’t feel like work, I truly get so much pleasure out of it. Challenging myself to reach the next limit and figure out how many more thousands of people can we feed or how many more meals can we deliver by tomorrow or next week. To me, it’s time well spent.

I think that I have a unique skill– I am really good at creative problem solving when it comes to real-life issues and coming up with effective solutions. I mean, what fuels someone to want to finish a puzzle? There are things that I can contribute, and if I don’t use it, then it’s kind of going to waste. If you have a gift, you might as well share it with the world.

It fuels me to see the recipients, people who are receiving our services, and their reactions to it. When it’s going to be zero degrees out, and someone is handed a sleeping bag, and they know that that’s their lifeline, it fuels me. When kids learn a new recipe and they’re taking home nutritious food to their family, but they might have had pizza for breakfast yesterday, it fuels me. I love learning from other people, strategically collaborating, picking people’s brains, kind of figuring out how to accomplish things that could have at first seemed impossible. But, when you break it down, you realize it’s all within reach. 

Charity Matters: When do you know you have made a difference?

Danielle Levin: I have two answers. One is in terms of the work we do with homeless outreach. Those moments look like people reaching out who have spoken at our speaker series and saying,” you changed my life, you reminded me that I’m human, you made me feel human again”  and to help someone realize that they are who they’ve always been, is a really powerful moment.

With our youth and families, I think that, honestly, through our COVID relief is how I’ve realized our impact because when you’re teaching kids how to cook, you’re not home with them. You don’t see what they’re doing outside of the program. So you don’t know what type of impact you’ve truly made. But I think that seeing how we can so quickly jump into action  and pivot to support the community because of the infrastructures that are there was powerful for me and the team. Unfortunately, our list of in-need families is growing as the crisis evolves. This week, we officially took every single person off of our waitlist. That’s a really powerful moment to know that every person in this community who’s expressed the need for food, we are able to provide it for them. 

Charity Matters: If you could create a billboard that showed your impact, what would it look like?

Danielle Levin: I think that it would be a picture of our community members, smiling, being part of the community. I think that it would have some kind of message about the individuality of everyone that we serve, and the personal stories– kind of meeting the community where they are. We’re not just providing kids with a meal and saying we changed a life. What we are doing is much more than that.

I think that in all the work we do, it’s important to give people resources and tools, and we can’t expect that they’ll use it in a certain way or receive it in a certain way, or that they even want it but equipping people with resources and tools is so important. I think that meeting people where they are and understanding that one kid might act like they hate our after school program, but we don’t know what’s going on at home. So meeting people really where they are, and letting them participate in the cooking when they want to, let them serve, letting them take extra servings if that’s what they want, or skip out on the servings– I think that it’s really about understanding that we might be serving a community, but within the community, each person has their own story. 

Charity Matters: If you could dream any dream for your organization, what would that be?

Danielle Levin: That there’s no longer a need for us, that we have to go out of business because everyone has the resources that they need to live their day to day lives, and thrive in whatever way that means to them.

Charity Matters: What life lessons have you learned from this experience?

Danielle Levin: I’ve learned a lot. Every single day I learn something new. I think the biggest one is to take risks because everything I’ve done is a risk. I never knew if any of it would work. I’m 25 years old and I launched an after school program at a New York City public school. We just pitched it. We just went to a school and said we think that we’d be a good fit for your school and we pitched it because we had nothing to lose. If we didn’t take that risk, we would have gained nothing, they would have gained nothing, but we’re now providing their students with these meals during this crisis. I think that one thing is to just take risks and think outside the box.

Charity Matters: How has this journey changed you?

Danielle Levin: I think that my entire perspective has changed. If you told me something, I would question where you learned that from, where you heard that from because to me, I’ve become so used to going to the source and saying to someone who’s experiencing homelessness, I heard this stigma, how do you feel about it? How does that make you feel? I think that hearing the story from the source and learning the facts from who they come from has definitely changed me and my perspective, rather than kind of just accepting what we as a society tend to believe is true.

I’ve always been someone who loves connecting with others, but my ability to do so has become much more well rounded because you might think you have nothing in common with someone who doesn’t have a home and is sleeping outside on the street for the last 10 years, but learning how to connect with someone who seems different, but then finding commonalities with them really changes you. I have become a lot more flexible in my life because when you’re working with individuals who don’t have as much structure as let’s say you and I might have in our lives, you have to learn how to be flexible and adaptable.

I think the biggest thing is knowing how to push limits and knowing that where I am now isn’t the end. There is so much more to do and so much more I will do. It’s easy to stick to the status quo, but to push the limits and see what happens has only led to success and has changed my perspective on how I live my daily life. 

 

CHARITY MATTERS.

 

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Brave Gowns

 

COVID is certainly a word that I can’t wait to remove from my vocabulary. It has turned our planet upside down and literally stopped most of the world….with the exception of a few amazing people, one of them who I had the good fortune to talk to last week. Her name is Summer Germann and she is no stranger to hospitals, illness, tragedy or adversity. What is remarkable about Summer is that she uses all of this adversity, including COVID, as fuel for good. She is a bright light who started a nonprofit, business and most recently reached out to her team to begin manufacturing PPE (personal protective gear) in the form of masks for thousands of health care workers across the country. A modern-day hero. I hope you enjoy our conversation as much as I did.

Charity Matters: Tell us a little about what Brave Gowns does?

Summer Germann:  We manufacture hospital gowns for kids, these are not standard hospital gowns. Brave Gowns transform the spirit of a child and allow them to use their imaginations. We didn’t want to just do a tchotchke gown where we put a design on it, so we recreated an entire design that could access the patient’s entire body without having to move them.  I felt like just because you’re going through treatment doesn’t mean that you should lose like all modesty and pride, right? So teenage girls or women or even boys can stay covered while they access any part that is needed. So that was really important to me that we actually had a quality product that is made here in the United States.

Charity Matters: What was the moment you knew you needed to act and start  Brave Gowns?

Summer Germann: In 2002, I had lost my only sibling, my little brother, Mac who was 10 years old to two types of leukemia. I happen to be 15 years older than Mac and was 25,  when Mac went to heaven in 2002.  He was discharged the morning before Thanksgiving and he was to come home for Thanksgiving the next morning.

Mac was hooked up to a dialysis machine and had never asked my mom to come to lay in bed and hold his hand. He was 10 and all boy, and he said, “Can you hold my hand?” So she crawled in bed with him thinking, maybe it was good to get rest. And she woke up to the machine beeping and Mac in cardiac arrest.

 So honestly,  there are so many blessings in the story. We had a whole year where Mac was in the hospital and we really just had that year to spend with him. We catered to him, with what we didn’t know at the time was a bucket list. It was non stop. I spent that night before he died with him.  So if we had to lose him or for him to go,  it was just the most perfect way. How many people get to have that gift? 

I knew there’s no way I’m going to have this lesson in life and go back to  a “normal life.”  I knew I had to take this experience and do something with it. And it took a long time, it took 12 years, it wasn’t like I walked out of the hospital knowing what that was. I worked with my brother’s stem cell transplant team and his head nurse at the time when he was sick. 12 years had gone past and we created this ultimate gown in 2015.

Charity Matters: Explain what Happy Ditto is and how it is related to Brave Gowns?

Summer Germann: I started the nonprofit Happy Ditto (which is happiness doubled) first because I was so adamant about making sure this work was all done through a nonprofit. Happy Ditto is a nonprofit where people can buy or sponsor hospital brave gowns for children.  Then I got to a point where I had to turn it into a business as well because we were getting orders from hospitals that can’t purchase from nonprofits.   I just made sure all the bases were covered, as long as we get the gowns to the kids.

Charity Matters: How did you decide to get into the PPE (Personal Protection Equipment) for COVID?

Summer Germann:  Friday, March 13th  I called my designer and I knew we had to figure out a way to help. We had talked about making masks and families have asked us for years. I knew we could make them fun. I called my factory and told them what I wanted to do and they had already started a prototype three weeks before. I said you have to give me a product that I believe in and this isn’t about money. It was supposed to be retailed at $12. We brought it down to $9 and we incur the shipping to get into the hospitals    They sent over the prototype and I said, “Okay, I just launched.” By Monday we had 11,000 orders.

We are breaking even and not doing this for profit,  there probably will come a time where mask are the new norm and someone will be pursuing that but right now, someone will call and say,” I really am in a situation I need a mask.” Then I’m just overnighting it.  

Charity Matters: What is it like trying to keep up with the need and demand?

Summer Germann: We have shipped over 30,000 masks in less than two weeks.  We’re doing mask for the military at Camp Pendleton, for police precincts, I think we have sent to something like 177 precincts for New York. We’ve sent off to over 40 hospitals, we have a huge list.

And then we also have people purchasing masks in bulk and they’re sending them to hospitals with us. So they’re just been going in every direction every which way. And then we have another line that’s for individual orders. And I know everyone’s scared because I can tell you we’re getting 2800 emails a day. 

Charity Matters: What are your biggest challenges?

Summer Germann: Staying true to exactly what our purpose is.  To be honest, I’ve received all of these offers to buy our company but they came with manufacturing in China.  I want the children in the best quality gown I can give them as fast as possible. All of our products are made on-demand, they’re never sitting on a shelf and never sitting in plastic. They are manufactured and within three to five days and on a child.  I just think it’s at a time where the kids are so sensitive and from infection, this is not the time to have gowns sitting for six months in a warehouse.

Charity Matters: What fuels you to keep doing this work?

Summer Germann:  I think everyone behind the scenes is my grandma or in a family with a medically fragile child, like Mac, and they’re all scared, right? All we did was create a better product and we’re sending them out there. We’re doing the best we can in the midst of this truth. We have three shifts going and opened the second factory. I saw a news story last night that said that the BraveGowns are slowing down the Coronavirus. That people think that, well that’s wonderful. I never even thought about our work like that.  I just feel like I’m just giving people a piece of comfort.  

Charity Matters: When do you know you have made a difference?

Summer Germann:  I really don’t. I feel like we’re just getting started five years in. I said recently,” I finally see the beginning.” I tried to explain it to someone the other day that is not in business. And I said, “I feel like we’re in the middle of building a house. And all I see is I’m standing in a kitchen that’s just gutted and chaos all around me.”  

The first two weeks of the 2800 emails and I was like, oh my god this isn’t working. I was still like, I’m still trying to stop and make dinner and do dishes like you know, like still just normal.  I think that article yesterday would be the first time where I actually thought wow,  people are believing in me a lot more than I see what I’m actually doing.

Charity Matters: If you could dream any dream for your organization, what would that be?

Summer Germann:  I know it’s bigger than me. And it’s time for me to be a really great ambassador for it and say goodbye.  I think there’s so much potential for Brave Gowns to be the new norm, it deserves to be the new norm.  I think it’s time for me to be the voice of Brave Gowns and show up where I need to, but let someone else run the show.

Charity Matters: How has this journey changed you?

Summer Germann: I haven’t changed I think in that’s what was really important to me, I really haven’t changed and  I would still give the shirt off my back for anyone. I am still the person that walks in the post office and says something to make everyone laugh.  I think my story is about just believing in yourself and knowing that you could do life differently, right?

It was not easy and but I stayed true to exactly what we started and who we wanted to be. And I think that’s really what this is all about. I hope that someday my whole story shows that you don’t have to do it a nine to five in a cubicle. You can take the risk you know,  there’s so much more in life than just being okay and surviving. Go live. Right? And I think that’s what the whole thing.

There are so many times where my family only had faith. Faith was all we had. I don’t go to church. I just know that I’ve always had this in me.  It’s not like I believe in God, so everything worked out. But I believe that everything that I went through and every hard moment, he had a greater purpose. 

Charity Matters: What life lessons have you learned from this experience?

Summer Germann:  I can see so many lessons where I shot myself in the foot. I think just knowing your way. It’s like it doesn’t matter who you are or where you came from. Right?  I’m just saying to the woman that has this vision and dream. It doesn’t matter where or what’s behind you, we are in a world of opportunity. Everything is so untraditional right now, tech companies are going back to hiring people without a college degree because they need people that think outside the box. Just always know your worth.

Charity Matters: Tell us what success you have haD and what your impact has been?

Summer Germann: We have given over 450,000 Brave Gowns in 387  children’s hospitals in seven countries.  I spent five years not building a business, I built relationships with people. I built trust. Someone will text me and say,” Is this really Summer?” Yes, this is really Summer. I got a call from a nurse in Florida who has COVID her husband’s deployed. Her parents are in Texas. And she’s like, I just have no one to talk to you right now and she talked to me. And this was two days ago, that’s exactly why I’m here.

 Those are the moments that I think are worth it. At the end of my life, I hope to God people really know that I cared. It wasn’t about like yes, I have this wonderful life now. It’s just the blessing of just being there for people.  The impact is to think that I’ve brightened up inside the hospital walls and that the kids are in superheroes and princess costumes and that’s miraculous, right?  But I also know there are 3.4 million children in the hospitals and I’ve only gotten 450,000 gowns out there.

CHARITY MATTERS.

 

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A little kindness goes a long way

 

“Gentleness and kindness will make our homes a paradise upon earth.”
C. A. Bartol

Last week the world went a little crazy. This week we are all taking a breath, a pause and most of us are working from home. Schools are closed and we are self quarantined and wondering what do we do now? I think the answer is simply to be kind.  Every act of kindness creates a ripple effect.

I witnessed the most beautiful act of kindness yesterday when going to the grocery store. I arrived 45 minutes before the store opened, on accident. The first person in line was a homeless man, the second person was Tom who owns a local restaurant and I was the third in line. The homeless man and Tom told me to stay because the line would grow. The first act of kindness. It was cold and started to rain.  Tom, the next in line, gave us purell wipes for our carts from his car. Kindness act number two. I gave the homeless man the $10 in my pocket, he thanked me so kindly and sincerely and asked if I was sure. I said I wish I had more. I then asked the man behind me to come out of the rain and moved the line-up and he then gave his umbrella to the man behind him, kindness number five, and the kindness just kept happening. It overwhelmed me and made me cry to see such kindness and compassion.

There are so many ways to be kind and it just feels good to help one another, especially in times like this. So to keep this ripple effect going I thought I would share a few suggestions to help in ways little and big. Every little gesture moves us all forward in a better place.

First and foremost charity starts at home. So make sure that you and your family have everything they need for the next couple of weeks. Make sure you are stocked up on supplies and staying home.

After you have taken care of yourself and your family, call and check on your elderly neighbors. See if you can leave anything at their doors or have a meal delivered. Post-mates, Door Dash or Grub Hub can easily do this. In addition, ordering from these sites also supports local restaurants and small businesses that need our support right now, so ordering a meal for a neighbor is a win-win for everyone.

Speaking of small businesses another small way to help is to buy gift certificates from your favorite hair salons or local businesses. This way you help them with cash flow now and have something to look forward in the near future. A small gesture that can go along way.

There are so many people that have been homebound long before the coronavirus and incredible organizations like Project Angel Food have been bringing meals to the sick and elderly. Project Angel Food has been busy trying to prepare additional meals and could use volunteers and donations. On a national level Meals on Wheels is doing the same thing and any donation helps those who can not get out or prepare their own meals, visit their website to find out how to support your local chapter. If you aren’t going out to dinner maybe donating a dinner for someone who needs it will make you feel just as great?

Most schools have now closed or are closing soon, nearly 22 million students receive their only meal of the day at school. No Kid Hungry is determined to help these children through the current crisis. By supporting No Kid Hungry you helping a hungry child here in the United States.

As our elderly and children are the most vulnerable populations during this crisis finding ways to support those in need is important. Save the Children is an organization that has been working with the World Health Organization and around the globe to work with young children around the world. Last year Save the Children helped 134 million children in over 120 countries. In the United States, more than 14 million children, or 1 in 5, grow up in poverty. Save the Children helps children around the globe affected by poverty, famine, and disease.

So, remember that charity starts at home. Start with your own family, then your neighborhood, local community hospital or food bank and then look to the national and global organizations. We are all in this together and every little bit of kindness, compassion, and generosity makes an enormous difference. We will get through this together.

Charity Matters

 

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Simply no words…

“All the art of living lies in a fine mingling of holding on and letting go.”

Havlock Ellis

2020 began like all New Years with hopes, wishes and dreams for the new beginning and the decade, it has been a difficult month for so many of my dear friends. There has been enormous loss, sudden and unexpected change, serious health issues and a host of challenges that were not in the dream category. I originally wrote this post six years ago and sadly it seems appropriate to reshare now. I do want you all to know that I do have a few amazing interviews in the cue and I promise that February will bring more incredible introductions and inspiration. Somehow they just didn’t feel like the right thing to share right now. 

Twelve years ago I had a phone call that changed my life, a car accident, death, and nothing was simply ever the same after that call. A dear friend just received that same call and so it all comes flooding back…the pain, the loss, the heartbreak that feels like it will never end….it is simply too much. There are simply no words….

As I struggle with how to hold up my friend, I find myself thinking about loss and growth. I think many of us feel that growth comes in tiny layers added up over time and that each day’s journey gets us a little closer to inner-growth. I have a different theory.

I believe life is like an earthquake where huge jolts cause cataclysmic shifts like tectonic plates to our souls. In nature, these shifts result in mountains. Inside each of us is a similar experience. When the rocking stops we somehow come out shifted. Our vision becomes clearer, we see what is important for the first time, we learn gratitude in everything and the growth is as monumental as a mountain. It is the growth of our soul.

Joan Didion writes, “we are imperfect mortal beings, aware of that mortality even as we push it away, failed by our very complication, so wired that when we mourn our losses we also mourn, for better or for worse, ourselves. as we were. as we are no longer. as we will one day not be at all.”

When I sat down to write this week about the soul, I had no idea how I would conclude. I certainly didn’t envision this, but as I struggle and question why? I don’t know why an earthquake has leveled a family, I can only pray that the shift will bring the strength, foundation, and the beauty of a mountain to each of them.

These are simply words when there really are none…

Charity Matters.

 

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True 2020 Vision

“The eyes are the window of the soul.”
 English Proverb 

I don’t usually repurpose stories but this one was more than worth sharing and is truly all about 2020 vision. I turned on the TV shortly after New Years to find this story about a young boy named Jonathan Jones. Jonathan was born color blind, as are 300 million people. One in 12 boys in the United States each year is born color blind. Can you even imagine a world without color? What is a sunset like without it?  In November Jonathan was given a special pair of glasses that gave him the ability to see color for the first time. The youtube video below went viral.


What happened next was what I wanted to share. Instead of just receiving the gift that gave Jonathan color vision, he wanted to pay it forward. Jonathan and his mom, Carole decided to start a Go Fund Me page to raise funds to provide even more glasses for other kids just like him. They asked for $350 donation on their Go Fund Me Page, which would pay for one pair of glasses. The first night  Jonathan’s page was already at $1,000.

A few weeks have passed and at last report, Jonathan had raised more than $35,000. When the company that makes the glasses, EnChroma, heard about the story they committed to matching his donation which is already well over 130 pairs of glasses or a world full of color for so many deserving people. True 2020 vision.

Charity Matters

 

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The heroes of 2019

“Nothing is given to man on earth – struggle is built into the nature of life, and conflict is possible – the hero is the man who lets no obstacle prevent him from pursuing the values he has chosen.”

Andrew Bernstein

There is nothing I love more than meeting new people. To me, each new person that I come across is like unwrapping a gift. I love learning people’s stories and what makes them tick. Meeting someone new is a never-ending source of joy for me. Some people collect certain things, I collect people because to me they are what matter. This past year I am so excited about the people that WE met at Charity Matters. When I meet amazing people so do you. Who wants to open a gift and not share it? So before we look ahead to 2020 I wanted to take a brief moment and look back at some of the extraordinary humans and their organizations that came into our lives this year.

We began 2019 with Tracy’s Dogs. The founders of Tracy’s Dogs, Tracy and Scott Whyatt, a Texas-based nonprofit that rescues thousands of dogs and partners them with new homes said to me, “People don’t find dogs, dogs find people.” Two weeks after that interview a dog from Texas named Lucy found us. An unexpected blessing of 2019 and the gift that keeps on giving. As they say, “Charity starts at home.”

photo credit: Classic Kids

Animals were not the only last legacy from the year. We met amazing women who turned their life challenges into thriving nonprofits. The remarkable Becky Fawcett who learned what it cost to adopt a child and turned it into her life’s mission to help families fund adoption with Help Us Adopt.

Jill Ippolito who showed us the power of love and healing with her inspirational work in juvenile halls with trauma-informed yoga with her nonprofit Uprising Yoga. Teaching and training minors in jail to learn how to process their trauma and break the cycle of pain. Jill used her past experience to help reform prisons across the country and heal generations of children who have experienced trauma and inflicted it on others to learn a new path towards healing. Jill is a truly lovely human and reminded me that whatever gift it is that we have, we need to share it with the world.

Then there was Marcella Johnson who lost a child at birth and used that pain to fuel her nonprofit The Comfort Cub. Marcella and her team provide healing weighted stuffed teddy bears/Cubs to help those mothers who grieve. We had such an incredible conversation that we set up lunch after and a friendship was born, she is a truly special human.

Marcella wasn’t the only new friend made in 2019, Roberta Lombardi the founder of Infinite Strength was so inspiring with her mission to financially assist women going through breast cancer pay for things such as daycare. We talked for over two hours and could have kept going. She is remarkable with her passion for serving and supporting these women and a true girls girl. I adored getting to know Roberta.

This year was not just about the girls, there were amazing men accomplishing unbelievable work, one of them was Seth Maxwell of the Thirst Project. At 19 years old Seth discovered how many people on this planet live without clean drinking water and made it his life’s mission to change that. Now at almost 35, he has. Seth’s organization has actually taken that number from 1.1 billion people without access to clean drinking water to 663 million and he is still going strong. More than that Seth is using his passion to inspire thousands of high school students across the country to join him in his mission.

Speaking of missions we met Colin Baden, the former CEO of Oakley sunglasses turned nonprofit founder, who continues to find ways to use technology to support Veterans with Infinite Hero Foundation. Colin’s humility and commitment to our Veterans left a lasting impression on me and the thousands that he serves. Our conversation left me in awe and reminded me that true heroes serve from a place of humility and Colin is a true hero.

While we met so many incredible and inspiring humans this past year there was one person whose positive attitude, commitment to joy and service left an indelible mark on me. His name is Hal Hargrave and he is the founder of The Be Perfect Foundation. Hal is a paraplegic and his organization works to help provide wheelchairs, cars, physical rehabilitation and a list of services for those with spinal cord injuries. Hal is someone who chooses joy and to live his life in the service of others.

All of these nonprofit founders serve humanity each and every day in so many different ways. I loved every single person I had the privilege of meeting this year and I loved introducing them to you just as much, I wish I could highlight them all here. 2019 was an amazing year and I am excited about what this New Year and decade will bring.

I think the perfect way to wrap up 2019 is with a quote from Hal Hargrave. I think Hal speaks for all the remarkable nonprofit founders and heroes when he said, “I fear not being on this earth more than anything because I know there is more that I have to give to this world and that I have more in the tank. I have an opportunity to either live life for myself or for others. It is an easy decision every day to live my life for others. The most interesting thing about it is that I am always the benefactor, whether it is a smiling face or a new attitude. It makes me a better and more aware person each time this happens. “

Wishing you a Very Happy New Year!

Charity Matters.

 

YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

Copyright © 2019 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

Brave Minds Project

This past week I was in the New York visiting friends and getting into the holiday spirit and had the chance to talk to an amazing New Yorker and recent nonprofit founder, Alyssa Carfi.  A young dynamo with a public relations career by day and someone determined to make a difference as a new nonprofit founder by night and weekends and every minute in between. I often think that people forget that nonprofit founders are entrepreneurs of the best kind, people who start businesses to serve others. Alyssa is exactly that, she has taken her experience as someone who had a brain condition called, ‘cavernous malformation’ and turned it into a remarkable nonprofit called Brave Minds Project.

Charity Matters: Tell us a little about what The Brave Minds Project does?

Alyssa Carfi: We are a 501c3 that focuses on supporting patients between the ages of 10-29 with brain and brain stem conditions. They are the forgotten demographic, it’s a time when your hormones are changing, your life is changing and you are trying to figure out who you want to be, trying to go to school, or launch your career and then when you find out that there is something wrong with your brains, it’s devastating. It completely changes your whole life and affects the people around you as well.

I was 15 when I was diagnosed and 18 when I had brain surgery. When I look back at what I had there were certain resources missing. I was very fortunate to have both a great support system and great doctors but I wanted to provide some of those resources. I remember my 15th birthday, I was in the hospital and a clown came in and gave me a teddy bear, while it sounds funny it wasn’t really age-appropriate. So what we do besides building a community of young people with brain and brain stem conditions, we have created a mentorship program to pair up a patient with someone in the outside workforce, so if they want to be a doctor or a teacher or an actress we pair them with a  mentor in that field so they have someone to look up too. In addition, we provide things such as courage kits which are care packages for our patients and their siblings which is a fun way we can bring them a little sunshine and a smile.

Charity Matters:  What was the moment you knew you needed to act and start Brave Minds Project?

Alyssa Carfi: Last November, the day before Thanksgiving I told my parents that I wanted to start Brave Minds Project  I am ten years out of my own brain surgery and am still affected by it. Being an adult, I wanted to give back because not everyone is as fortunate as I have been. I’ve been able to go to college, to study abroad, to work and now as I navigate my own place in the world, I knew I had to do this. So, I told my parents I wanted to start a nonprofit and they agreed it was a great idea. So I applied and this past June we got our 501c3. We are just getting started.

Charity Matters: What are your biggest challenges?

Alyssa Carfi: Because of my day job in PR, getting the word out has been pretty easy but the big challenge is that our patients are everywhere and we have to be wherever our patients are so the logistics can be difficult.  We continue to partner with more hospitals and build momentum and we would love to be nationwide eventually. It is one step at a time but I honestly didn’t even think we would be this far in our first year.

Charity Matters: What fuels you to keep doing this work?

Alyssa Carfi: It is a lot but it is also very rewarding to hear the patient’s stories and they are inspired that I went through the same thing. We had one patient who was 24 and a year out of brain surgery. I talked to him and told him how incredible he looked for being only a year out of surgery. I told him that I waited for ten years until I met someone else who had even gone through what I had. He was so excited to just have an honest reference point for how he was supposed to look. The work is hard but it is truly rewarding to connect people going through this. Now that same 24 year old is sharing his story to help others as a Brave Minds Project Ambassador. 

Charity Matters: When do you know you have made a difference?

Alyssa Carfi: It is those moments when we support our patients which means so much. We had a patient recently that is 19 years old college student with a brain tumor that affects her vision. She needed a very special and expensive contact lens. The Brave Minds volunteers surprised her with this special lens so that she could see. She was beyond grateful, those are the moments that remind me that we are making a difference.

Charity Matters: Tell us what success and impact you have had?

Alyssa Carfi: The biggest impact so far has been the patients that we have helped and their patients. Overall, the connection we have created by bringing people together within this community is something you can’t put a number on. We connect patients to other patients and have incredible events at The Brain Bar, in patrnership with Stroke of Genius,  where we bring in speakers such as well known neurosurgeons to talk about various topics, like combining yoga and brain surgery and why its best for recovery. Friends and family of patients have also met and created another level of support. 

Charity Matters: If you could dream any dream for your organization, what would that be?

Alyssa Carfi: As we come upon our one year anniversary of the Brave Minds Project, my dream would be to raise more funds to put resources into building more programs. I want to continue to foster our community along with our programs. We have so many great things in place and I am really excited about where we are heading in trying to help this demographic of patients along with the hospitals and institutions.  I think that we are bringing people together that can really help to move the needle.

Charity Matters: What life lessons have you learned from this experience?

Alyssa Carfi: I always knew I was going to do something based on what happened to me. I  know I was put on this earth for a larger purpose and this experience has taught me that anything is possible. I work really hard to make this happen and I work really hard at my job. All the funds raised by the nonprofit go right back into the organization. I have gotten very good at focusing and compartmentalizing to get things done. The Brave Minds Project has reminded me that people always want to help and I am always amazed by the gifts of time and effort put into showing up and supporting this work.

Charity Matters: How has this journey changed you?

Alyssa Carfi: I have grown as a person. This has been really freeing because not everyone knew my story. I wear my story every day I have 6th and 7th nerve palsy which is where your eye and smile are affected. As a result, I  have had a lot of cosmetic surgery and it is definitely better. Starting the Brave Minds Project has forced me to be vulnerable and to open up and say, “Yeah I had this, this is what happened to me and because of this I now run a nonprofit to help others like me.” People no longer see my limitations anymore but the whole picture of what happened to me and how I was able to turn it into something good and that fuels everything that I am doing right now.

Charity Matters

 

YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

Copyright © 2019 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.