I have been privileged to meet hundreds of truly remarkable humans over the years. All of them are amazing but there are always a few that are so dynamic, charismatic, passionate, and wise that you can never forget them. One of those people is the remarkable Hal Hargrave. You may remember his story from a few years back. Hal was involved in a tragic accident that left him paralyzed fourteen years ago. He used that experience to serve others suffering paralysis with his nonprofit the Be Perfect Foundation.
Join me today for a conversation that is better than caffeine. If you have read Hal’s story and not heard his passion, you need to take a listen. Trust me, this will be a gift you give yourself today. The man is pure light and inspiration.
Here are a few highlights from our conversation:
Charity Matters: Tell us a little about what the Be Perfect Foundation does?
Hal Hargrave:Be Perfect Foundation– provides direct financial and emotional aid to individuals with paralysis. The foundation approves scholarships for everyday medical necessities such as; medical supplies, wheelchairs, home, and car adaptations, medical equipment, and exercise-based therapy.
Charity Matters: What was the moment you knew you needed to act and start Be Perfect Foundation?
Hal Hargrave: Shortly after I got injured, I remember lying in my hospital bed and coming to the realization that with every individual that walked through my hospital room, that each individual that left my room and left the hospital took away a mindset, approach, mentality, and went about the rest of their day emotionally in a state that was directly predicated towards my mood state, mental state, and how well I was emotionally coping with my injury and circumstance.
I came to a quick realization that I could give each and every individual a positive takeaway that could set the tone of their day for the rest of their life. Finally, I came to the consensus that each and every decision that I made about how I was going to treat, talk to, and share moments with individuals was going to directly affect them either negatively or positively. I was not willing to be a part of the simple idea that I could negatively influence somebody’s life any longer.
Charity Matters: What fuels you to keep doing this work?
Hal Hargrave: I believe that this is meaningful and purposeful work. I’ve stopped asking “why me” and I’ve started asking “why not me?” Once I came to the realization that this happened “for me” and started looking through the lens that I “get to” do what I’m doing in my life. I started realizing that maybe this really is a blessing. That the life that I’m living is far bigger than just me and is for me.
Charity Matters: When do you know you have made a difference?
Hal Hargrave: I know I have made a difference in this world when others see differences in their world being realized. When other’s dreams come true, their goals are achieved, and happiness is obtained.
Charity Matters: Tell us what success you have had?
Hal Hargrave: The success that we’ve had over the past 14 years of a philanthropic mindset as a family and as a community has been nothing short of amazing. We have raised over $7 million for individuals suffering from paralysis. This does not include the resource of hope that we have built through being a physical, literal, and emotional resource to those who are in need.
Charity Matters: What has your impact been?
Hal Hargrave: Our impact has changed lives. Over the past 14 years $7 million and well north of 500 people and families. It has changed lives in the way that people live independently. How people live without despair any longer because they see hope and much more. The financial support that we provide to individuals to seek out therapeutic options has allowed them to achieve a healthier form of themselves. Having their health has contributed towards staying out of the hospital as well as finding a network of people that they can relate to. We provide a place where they will not give up, and emotionally being in a place where they see that their contributions to society and to others are life-changing.
Charity Matters: If you could dream any dream for your organization, what would that be?
Hal Hargrave: My dream is for us to get to a place where we have an endowment. An endowment would ensure that we would be around for life. Ideally, if this endowment was established, we would be able to continue to provide scholarships. This foundation should be around forever.
Charity Matters: What life lessons have you learned from this experience?
Hal Hargrave: One of the major life lessons that I’ve learned from this experience is the things that we think limit us just might be the platform that we need to propel ourselves forward to actually helping create change. We always think that we have it as worse. However, maybe life gave us an opportunity, not a setback.
When we start looking at life through a lens that maybe something was preventing us from something even worse happening, we start to live with the appreciation that we have a second chance. Sometimes these circumstances that put us into a deep, dark, and physically disabling place, actually are the opportunities that give us the tools that we need to create change in others’ lives. You don’t need to create change through physical activity. You can create change through intentionality, sincerity, words, and advocacy.
Charity Matters: How has this journey changed you?
Hal Hargrave: This journey has changed everything for me. I will be honest with you, 14 years ago I did not think that my life would amount to anything. I was under the impression that my physical setbacks in life would propel me into a place of a life that was meaningless, hopeless, and unfulfilled. What has happened over the past 14 years, which has not been easy, and has not been because of the lack of tenacity, trying, and getting up with purpose, has been nothing short of a dream could true.
CHARITY MATTERS.
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People say that youth is wasted on the young and never has that statement been less true than with this incredible nonprofit founder, N’dea Johnson. At only 24 years old she has undergone incredible personal loss and trauma and has used that to help others with her two-year-old nonprofit The Yellow Heart Committee.
Join us today to learn why you are never too young to make a difference and inspire others. Hear N’dea Johnson’s inspirational story of loss and perseverance as she works to heal and serve survivors of sexual assault and trauma.
Here are a few highlights from our conversation:
Charity Matters: Tell us a little about what The Yellow Heart Committee does?
N’dea Johnson: We support the holistic mental health of trauma survivors through policy, advocacy, education, and community outreach. How we do this through the pillars of HEART, which stand for Healing, Empowerment, Advocacy, Relationships in Therapy. So everything we do programming-wise has to fall under those pillars making sure we’re always centering the survivors. A big part of our work is communicating and advocating for survivors. We do that by working with elected officials to help draft legislation for trauma survivors.
Charity Matters: You are young for starting a nonprofit, were you always philanthropic?
N’dea Johnson: I’ve always enjoyed doing work and volunteering in the community because of my mom. From a young age, she always was the one that was telling me, you have to support others, you always have to be good to others and always help people. When I was a fifth grade, I was organizing students to get tutoring for the gate program and Star testing. I’ve also learned from her because she did have breast cancer. Even with all that she was going through, she was always still caring and concerned about the community. And that’s something I replicated.
When my mom passed away, I ended up starting an organization in my middle school a few months after she died. I was in seventh grade and raising money for families with family members who have cancer. The whole point was to donate the money to help support anything that families were missing. People were always surprised and say, “You’re 12 years old, your mom just died and you’re doing this?” That’s how my mom was when she was going through adversity herself. I’m going through it right now. And I know she wouldn’t want me just moping around. This work is how I handle my grieving is by turning it back into community service and doing things for others going forward.
Charity Matters: What was the moment you knew you needed to act and start The Yellow Heart Committee?
N’dea Johnson: It started on January 1, 2019, when I was sexually assaulted. I actually had to go back to school, two days later, because it was winter quarter and I was graduating early from UCLA. I’ve always been a 4.0 student always and this really destroyed me. The irony is that I was trained in rape response because I was a Resident Assistant. Rather than letting myself heal, I tried to suppress it because I was so determined to graduate early, to go to Columbia for grad school. I kept it all to myself.
In March of 2019, I had pre-scheduled jaw surgery. I came out of jaw surgery paralyzed. The doctors were said, “How did you have jaw surgery, but your legs are paralyzed?” Nobody knew what happened, even I didn’t know what happened. I couldn’t talk because I had jaw surgery. I had to relearn all of my functions; eating, talking, walking everything. Then we realized I had experienced conversion disorder.
Conversion disorders are when you convert the psychological stress of trauma into a physical reaction. So when I went in for surgery and went under anesthesia, my body thought I was being attacked again. As a result, I ended up having nerve damage. Being in a rehab facility in the hospital and that’s where it really made me want to start this. I gave birth to the Yellow Heart Committeein a hospital bed. Once I could walk again, I knew the first thing I was going to do was report him at the police station. At that time I hadn’t. The second thing I was going to do was start a nonprofit. So that’s where I really got started.
Charity Matters: What are your biggest challenges?
N’dea Johnson: It is so hard because I’m learning from the ground up. But I’m also learning how to be an adult in the same capacity. So things like you have to pay your taxes for like nonprofits. I’m like, “I don’t know how to do that?” Those types of things I’m having to learn and becoming an adult while growing up.
Charity Matters: What fuels you to keep doing this work?
N’dea Johnson: The individual people one hundred percent. My nonprofit, everybody’s unpaid right now and we all have full-time jobs or are full-time students. We have our days where we have a really rough day at work. The team says,
” All right, what are we doing next? How we’re gonna solve this?” And it’s just knowing that I can have those moments of vulnerability and say I need support. They have my back and they’re like, “Okay, so what do you need us to do to keep this nonprofit going? How can we support you?” Those individual people in terms of my team are what I love, and it feeds me to keep me going. That and the survivors who reach out to me in times of crisis.
Charity Matters: Tell us what success you have had and your impact?
N’dea Johnson: We’re the connectors definitely. We bring the people who are the decision-makers and the survivors to the table. In six months, we met with 44 elected officials to advocate for our Sexual Domestic Violence Task Force Legislation that we wrote. We are introducing that to California and working to get a federal level hearing. Our state-level hearing is in September on mental health and trauma at the Capitol in California. We definitely bring those people who can make those decisions to the table to hear the stories of survivors.
Charity Matters: How has this journey changed you?
N’dea Johnson: I would say my self-awareness has changed, I definitely think that I’m more conscious of not just my own experiences, but also how my words or my actions or anything can impact others. Something that’s really been a big thing of mine is that we may want to judge somebody right away. But let’s think about why they’re acting the way they’re acting. Let’s go deeper than the immediate reaction, and wonder what trauma happened for why did they react, right?
That’s not something that I would have been conscious of two years ago. And I think that I’m more in touch with who I am in terms of why I’m feeling a certain way. Or even how I need to react to a situation and to be more empathetic to people. It is important to realize what is the intent versus impact. The intention may not have been to hurt, but the impact may have hurt somebody. Being aware of those types of things has really been something that has made me grow and change.
CHARITY MATTERS.
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In full disclosure, there is nothing more fun than talking to your friends about their nonprofit work. Especially when their work involves creating magic for very sick kids with extreme hospital room makeovers. Think of your favorite HGTV show with the recipient being a sick child and the makeover being a hospital room. Many of you may remember the incredible story of the nonprofit Once Upon a Roomthat I shared a few years back?
Ford and Heidi Johnson, Jennifer Hull, daughter Josie and Sienna Dancsecs
Join us today for a fantastic conversation with the three Once Upon Roomfounders; Jenny Hull, her daughter Josie Hull and Josie’s best friend Sienna Dancsecs. Where we will learn about Jenny Hull’s incredible journey from being a celebrity assistant to an adoptive mother and nonprofit founder. These three remarkable humans will inspire you with their friendship, love, and beautiful work helping thousands of children and families each year.
Here are a few highlights from our conversation:
Charity Matters: Can you share Your journey with Josie prior to beginning Once Upon a Room?
Jenny Hull: I was with an amazing family in Malibu that I worked for and they were very involved in an organization called Healing the Children. Subsequently, I became involved with them too. What we did there was bring kids here to the United States for surgeries, and then we’d send them back home after they were healed. Long story short, we got this request for these two adorable high conjoined twin little girls.
It was kind of our mission to bring these babies( Josie and Teresa) here to America and they were conjoined at the head. They were separated at UCLA Medical Center and had a 23-hour surgery. Our girls were the first successful girls to be separated successfully. Long story short, I am now the very, very proud adoptive mother of Josie, one of the twins. Josie’s other twin is with another amazing family in Valencia and we’re really close together. The birth parents are really the heroes in the story, selflessly allowing their children to be in America because that’s the only way they would have survived. They really are the unsung heroes in this, we are so grateful to them.
Charity Matters: What was the moment you knew you needed to act and start Once Upon a Room?
Jenny Hull: We spent we have spent over the years, I can’t even count the number of days and surgeries there have been too many! We did we personalized Josie’s room every single time. Everybody would walk in with and they would look at it and say, “Oh my gosh Josie you love pink!” Then they would recognize her as a person instead of her what she was in there for and it really touched our hearts.
We realized it was especially important in a teaching hospital when you have so many new residents, for them to recognize the person is so important. So at 11 years old, we were laying in bed one night and I vividly remember this and Josie leaned over and says, “Mom, I really really need to be doing something for someone else. I want to help other kids in the hospital.” I said, “That’s a great idea!” We called Sienna who was the same age, 11 years old, and told her the idea. Sienna said, “Let’s go in and decorate these hospital rooms.” Then Sienna came up with the name.
Charity Matters: What are your biggest challenges?
Jenny Hull:Definitely fundraising is a big challenge. In all honesty, we thought when we started we’ll do 50 rooms a year at CHLA. Period. We thought this is great and it’s something that will inspire the girls and they can inspire other people. We didn’t think much of it and we ended up doing 102 or 105 rooms our first year. Our town is so supportive, and they really rallied behind what we were doing and really supported the effort and we were so grateful for that.
Then we started expanding, all of a sudden, it was like the universe opened. It’s really kind of because the girls took this on. People see the greatness and what it does for the hospital’s families and especially patients.
Charity Matters: What fuels you to keep doing this work?
Jenny Hull: What really keeps me going is these two amazing faces next to me. Literally, there are times that I don’t think I can do this anymore. I’m exhausted and fundraising is so hard. We just want to change the lives of these families and these patients so much. Every room is our heart and soul goes into.
Before COVID, we were at anywhere between 40 and 70 rooms a week. There’ll be nights I’m like, we’re done and then I look at Josie and Sienna. It’s their dream, journey, and vision. I feel like I cannot let down for a second if we just need to keep going.
Charity Matters: Tell us what success you have had and the impact of Once Upon a Room?
Sienna Dancsecs: In terms of impact, we started in one hospital at CHLA in Southern California. Since we began we’re now in 12 hospitals across the country. We have had three new people and new states and new hospitals reach out in the past five days, about opening. It continues to grow, we’ve done over 4000 rooms.
I also think one of the things when it comes to impact is the impact we have on the kids and their families with their hospitals days and medical journeys. More than that we have such an impact on the volunteers, the hospital staff, and our donors. I have had friends that have come to the hospital to volunteer, in high school and college, not knowing what they want to do when they grow up and leave saying, “Oh, I know, I want to be a nurse or I want to be a child by specialists.” One volunteer is now working in the foster care system because she met people through her work with us at the hospital. So I think it’s everybody around that really is affected by it, not just the patient or family. It’s everybody involved.
Charity Matters: How has this journey changed you?
Jenny Hull: I’ve definitely learned so much about human compassion. To walk into rooms and the life lessons that we’ve just learned from our patients. Watching their journeys being able to sympathize and empathize with what they’re going through and just to look at the world with such love, and try to figure it out. There are people you walk by every single day that you just know are fighting some battle. It’s how to appreciate the people you are asked to be with on a daily basis. The greatest gift I’ve been blessed with of all the people we’ve been surrounded with, Josie and Sienna. Literally, truly the best gift we could have ever asked for. So, gosh, I’ve learned so much and I’m so incredibly grateful that we’ve been led down this road. You know, we didn’t we didn’t pick it. It picked us.
Charity Matters: What life lessons have you learned from this experience?
Sienna Dancsecs: I learned a lot about the business of nonprofits and how all these things work. Walking into kids’ rooms, every day who were super sick, or they were at the end of life made me realize how lucky I am just to be healthy. I think it’s something that we all take for granted. So that’s something that I quickly learned, talking to these kids, watching them fight for their lives, watching them lose their battles to cancer, it was really hard to watch. But it made me so grateful for everything that I have.
It also taught me from a young age, how important it is to give back and to help other people. I feel like it’s a really great gift that I got from Jenny and Josie that I learned that this was something that made me feel so good and made me feel like I was doing something to help other people. And it’s something that I continue to do. I know, I’ll take it with me wherever I go. Prioritizing, helping other people giving back, brightening somebody’s day, even if it’s something small. You never know what kind of difference that you can make.
CHARITY MATTERS.
New episodes are released every Wednesday! If you enjoyed today’s episode, please connect with us:
If ever there was a year that turned our planet upside is has been this one. Last year we all began 2020 with such hope. A new decade and such expectation that was to come crashing down three short months later. Now we are all counting down the days until 2020 is behind us. As someone who tries to find the silver lining in everything when I look back at 2020 I smile thinking of the amazing humans we met this year. Each of these people gives selflessly to make our world better. I thought today we would look back at some of the remarkable conversations of 2020. And a few highlights.
The Kindness Campaign: Andra Liemandt
We began 2020 by talking to the founder of the Kindness Campaign to learn about their mission to serve the socio-emotional needs of children. This year their work was more important than ever. You can revisit the full conversation, here.
CHARITY MATTERS: WHAT WAS THE MOMENT YOU KNEW YOU NEEDED TO ACT AND START THE KINDNESS CAMPAIGN?
Andra Liemandt: Suicide is the second leading cause of death among teens. Several years ago this touched my life in a very powerful and profound way when a dear friend of ours took her own life and she was just 12 years old and it was a direct result of bullying. There was no path for me to start a nonprofit or any inkling that I would be sitting here five years later talking to you about this. That event changed my life forever and was the catalyst for an ongoing healing process with my daughters.
Homelessness:
There are so many incredible organizations trying to help the homeless. This year we met more than a few. These two women especially stand out for their incredible compassion and dedication to serving the homeless. Heather Carmichael has been working with homeless youth for almost two decades at My Friends Placeand Caitlin Adler works to ensure that the homeless have proper clothing through her nonprofit Project Ropa.
My Friends Place: Heather CArmichael
Charity Matters: What are your biggest challenges?
Heather Carmichael: There are so many. The landscape around addressing homelessness is under such dynamic change. For years, no one spoke about homelessness and now we have an epidemic crisis. Communities are overwhelmed and LA is in such pain about this. How do we continue to engage communities in meaningful ways so that we maintain momentum towards a solution?
I feel very grateful to be doing the work at My Friend’s Place, where our main priority is to resolve these young people’s homelessness while continuing to create meaningful opportunities to see the impact and to feel involved. How do we scale to that in a meaningful way? A multitude of things got us here and it will take a multitude of things to fix this. We need to create meaningful opportunities to get our community and supporters involved in understanding and being a part of the solution.
Project Ropa: Caitlin Adler
Caitlin Adler created Project Ropain 2015 to address the challenges that homeless people face in obtaining and keeping clean clothes. Though homelessness is accompanied by many things, one of its greatest indignities comes from the absence of hygiene services.
Charity Matters: Tell us a little about what Project Ropa does?
Caitlin Adler: Most homeless people literally have only the clothes on their backs. Access to clean clothing is essential to the overall well-being of a person and can be the key to opening doors to employment and housing. How you look affects how you feel about yourself and how others treat you. Now, because of the health threats posed by the coronavirus, the need to overcome those challenges has become ever greater.
Health:
Claire Marie Foundation: Marianne Banister
When former LA reporter Marianne Banister lost her 17-year-old daughter, Claire to melanoma. She and her husband went to work to get the word out about this cancer and created the Claire Marie Foundation.
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.
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.
Brave Gowns: Summer Germann
Summer Germann 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 Brave Gownsand when COVID hit she 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.
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. They sent over the prototype and I said, “Okay, I just launched.” By Monday we had 11,000 orders.
Scarlet C of COVID
I hate to end this year with this story but COVID was the defining story of 2020. This articlewas reprinted by a number of magazines and publications and had more views than any piece I wrote in 2020 so it was worth an honorable mention on the list.
While I didn’t interview any specific health care workers but rather organizations that support them, it is worth mentioning that our front line workers were THE true superheroes of 2020.
There are so many remarkable humans on this planet and these are just a few. As 2020 comes to a close and we look to a New Year ahead I think there are so many qualities to emulate that each of these heroes possesses. Tony Robbins sums up these heroes perfectly when he said, “The people who are most alive, driven and fulfilled are those that seek to lead a life of contribution and service. To something greater than themselves.” Thank you, Andra, Heather, Caitlin, Marianne, and Summer for showing us by example what true service and living a life of contribution looks like. At the end of the day isn’t that what we are all striving for?
Wishing all of you blessings for a most joyous and 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.
I know this year has been difficult for many of us. When I began thinking about how this year has affected us all, I think that we have a renewed appreciation for one another and most especially our health. This image from It’s a Wonderful Life is a reminder of what happens when we realize what we have and not what is lost. This year our priorities have shifted in the best of ways, our self-care, appreciation for what is important, and how we spend our time. 2020 has changed all of this. As Christmas is just a few days away I thought I would share a few inspirational thoughts to keep us focusing on the true meaning of the season and what matters.
“May you have the gladness of Christmas which is hope; The spirit of Christmas which is peace; The heart of Christmas which is love.”
Ada V. Hendricks
“Christmas is the spirit of giving without a thought of getting. It is happiness because we see the joy in people. It is forgetting self and finding time for others. It is discarding the meaningless and stressing the true values.”
Thomas S. Monson
“At Christmas, all roads lead home.”
Marjorie Holmes
“My idea of Christmas, whether old-fashioned or modern, is very simple: loving others. Come to think of it, why do we have to wait for Christmas to do that?”
Bob Hope
It is a wonderful life despite the challenges we face. We have much to be grateful for. Wishing you and yours the most magical Christmas season. Merry Christmas!
CHARITY MATTERS.
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
“Sometimes when we are generous in small, barely detectable ways, it can change someone else’s life forever.” Margaret Cho
Rather than focus on the election today, I wanted to focus on what makes me happy. Honestly, nothing makes me happier than planting the seeds of compassion in our children. A few years ago, that common thread connected me to the nonprofit founder, Molly Yuska of Project Giving Kids. We met when I interviewed her for Charity Matters.Project Giving Kids (PGK) is a nonprofit organization that cultivates empathy in youth by connecting them to meaningful and age-appropriate service activities. Their mottos is,“connecting kids to causes.”
Project Giving Kids was initially launched in Boston in November 2013 after realizing there was no source for families to find age-appropriate service projects for their children. Molly saw clearly that there was a need to leverage technology to make it easier for kids to be powerful agents of positive change in our world.
Project Giving Kids reaches out to nonprofit partners to find volunteer opportunities for a multitude of ages. Four years ago Project Giving Kids hosted their first Create the Change Day . These days across the country provided a chance to come together as a community to help the amazing nonprofits in our own backyards. More importantly, Create The Change Days teach our children about the importance of service and the power we each have to make a difference. There is nothing better than combining nonprofit partners and families wanting to instill empathy and kindness in their children.
However, this year COVID put a damper on this annual tradition. PGK was committed to ensuring that Create the Change Day went on so they will be hosting Create the Change Week. An entire week of free virtual service opportunities for kids and teens. Next week from Saturday, November 7th until Saturday, November 14th your children can volunteer and participate in amazing virtual service opportunities.
PGK will offer a series of free virtual service activities via Zoom tied to the eight causes on their website. Everything from helping isolated seniors to protecting the environment to helping other kids and fighting hunger.
They will also have a special Teen Track for older youth, so there really is something for everyone.
As Molly said, “We are hopeful we can catalyze a small army to commit themselves to join us in the simple acts of goodness that add up and truly make a difference” Create the Change Weekis the perfect way to introduce young children to the joy of service to others.”
With all the craziness happening in our world right now, doing something positive to help someone seems like a good idea. So register your children for Create the Change Week .
As Margaret Cho said, “Sometimes when we are generous in small, barely detectable ways, it can change someone else’s life forever.”
Charity Matters
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
“Life starts all over again when it gets crisp in the fall.”
F. Scott Fitzgerald
It is officially fall, a season of change, and a time to witness the glory of fall leaves and shed the old before moving ahead. It is a season of change. Living in Southern California Fall isn’t usually a season for us. Sure we all fake it with decor and pumpkins but nature isn’t showing us the way as it does in the rest of the country. So this weekend, as I head to the east to catch a glimpse of real Fall, I find myself pondering the greater meaning of the changing of the seasons.
Change
These past seven months every one of us has faced extraordinary change in one way or another. Whether it’s as simple as not going to church, as difficult as not going to school, or as complicated as health issues, missing elderly family members, financial struggles, or employment. In one way or another, we have all experienced incredible change and loss. Some days it feels as if we are living in an alternate universe with our sense of “normalcy” gone. Many of us are waiting for things to “return to normal.”
LOSS
We cling to the past and life as we knew it. Much as a tree tries to hold onto its leaves as fall tries to shake them down. I think about the changes some of our oldest citizens have witnessed in their lifetimes. Some born before the 1918 pandemic witnessed World War I, the Great Depression, World War II, and the list goes on. Each major world event created enormous loss and each event changed life as they knew it forever. The leaves fell off, one by one as each old way of life was blown away. No matter how hard we try to hold on, the change is here and it is inevitable.
Honestly, for me, I think I am just beginning to process it all. So much happened so quickly between the pandemic, the economic aftermath, George Floyd, hurricanes in the south, and then our wildfires here in the west. Those fires, some of which still burn, have destroyed more than a million trees that will not grow this year. Just as the pandemic has taken more than a million lives across the globe. The loss is unimaginable in so many ways.
Regrowth
However, if there is one thing I know about the forest, is that after a fire and complete destruction. The soil is fertilized and ready to begin again. That change, even the change of colors on the most beautiful fall tree will lead to loss. And that loss whether of a way of life, of a loved one, of a job, of school, will inevitably lead to a rebirth.
I will be walking in the fall foliage this weekend, seeing the beauty of change and the shedding of old leaves. I will be thinking about the opportunity for growth, a place to start anew, and a moment to mourn the beauty of what was.
CHARITY MATTERS.
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
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.
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 Wagonhurst: Claire 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.
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
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.
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
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 HOPEis 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.
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
Today is September 11th. A day that none of us will ever forget. We all know where we were when we heard the tragic news. The pain we all felt and the helplessness. While this date will always be a day tinged with sadness it has been deemed by Congress as a National Day of Service and Remembrance since 2009 because of two remarkable men.
The Back Story
Their names are David Paine and Jay Winuk. Two friends determined to ensure that this day is recognized not as a day of evil but as a day of good. Jay’s brother, Glenn, was an attorney in lower Manhatten, as well as a volunteer firefighter and EMT. Glenn lost his life on September 11th. Jay said, “Glenn did what he was trained to do. He had the skills and courage to run into the burning World Trade Center, towards danger, to save lives. Glenn always put others ahead of himself, and he sacrificed his life the way he lived it, helping others in need.”
The Action
In 2002, David and Jay set out to start a nonprofit called MyGoodDeed.organd reached out to the 9/11 community for support. Their goals were to establish a nationally recognized day of service and then build national support for 9/11 Day. Their long term mission was to ensure that9/11 Day was transformed into a day of service and an enduring tribute for those who were lost and injured on 9/11.
The Result
Nine years after beginning their journey they accomplished their goal of having 9/11 Dayrecognized as a National Day of Service and remembrance. Today, eleven years later, 9/11 Day is the nation’s largest annual day of charitable engagement with nearly 30 million Americans volunteering, support causes they care about and performing good deeds in tribute to those lives lost that day. MyGoodDeed became 9/11 Day.org, a nonprofit that supports this day and provides resources (like these in the video below )for ways to volunteer and serve.
Your Action
David said,“Ultimately we wanted something positive to come from the loss of so many innocent people in such a terrible way. We didn’t want terrorists to forever define how 9/11 would be remembered. We wanted to focus instead on how our nation came together, the spirit of unity and compassion shared by so many.”
Jay said, “As a 9/11 family member, I wanted to find a very special and significant way to honor my late brother, along with the many others who died with him.”
I was raised to never discuss religion or politics, to respect everyone’s beliefs and to always be open to learning from others. Faith plays a large part in my life and in my nonprofit work. The nonprofit a group of us founded over seventeen years ago provided chaplains of all faith to Children’s Hospital Los Angeles. That experience confirmed to me that believing in something bigger than yourself is something that will always serve as a life anchor, whatever that belief is.
I took my current job as the Executive Director at TACSC mainly because I loved being a part of planting the seeds of compassion in our children and teaching students about service. Right before COVID, I had the privilege of meeting Avram Mandell, who is doing similar work with youth but taking it to a whole different level with his nonprofit Tzedek America. Let’s hope that as millions of children get ready to begin school this month that they have access to the incredible experiences Tzedek America is providing.
Charity Matters: Tell us a little about what TZEDEK America does?
Avram Mandell: We engage Jewish teenagers through immersive social justice experiences. We try to teach empathy and not sympathy and we are trying to move the needle in the social justice world by connecting these teenagers to social justice issues and to people affected by these issues. The best way to do that is through stories and meeting people and coming into proximity with those who are dealing with these issues as opposed to watching a documentary or reading an article. After kids go on our trips they begin volunteering, donating their time, running drives at their school getting, and their parents involved. We are really seeing the impact of our work.
Charity Matters: What was the moment you knew you needed to act and start TZEDEK America?
Avram Mandell: I have a Master’s in Education from Hebrew Union. I had worked at Jewish Summer Camps, been a youth group advisor, and had experiential learning in my blood. I ran school programs, adult learning programs, garden programs, video programs always acting as an innovator and creator. My attitude in life is that there is always a way to make things happen.
In 2005, when Hurricane Katrina hit I wanted to go and get my hands dirty and really do something about this national natural disaster. So I reached out at the synagogue and twelve teenagers volunteered. We had a contact at the Methodist Church in Pearlington, Mississippi and we set out to do flood relief work. We all had a powerful experience bringing hope to that part of the world. I remember when we went to our cots there were little bags for us with toiletries and notes from kindergartners thanking us for volunteering. I had never been a recipient and it was such a beautiful moment for all of us.
We came back from the trip and all of those students wrote their college essays about this experience which was transformative. Teenagers care about social justice but they don’t know what to do about it. So I wanted to create an organization that would engage Jewish teenagers in their Jewish values and that those values support their passion for doing good in the world. I wanted to give them the tools to do something about it. We began in 2014, as a gap year program and people started calling and asking for half-day trips and then four-day trips. We were taking kids to skid-row, the border, and giving them these incredible experiences and word started to get out.
Charity Matters: What are your biggest challenges?
Avram Mandell: I think one of our biggest challenges is staffing. How do you find someone to be part of a start-up and has that same passion that fuels you to do this work? It’s one thing when the founder is up until 1 am working but if I am just an employee I don’t have that same commitment. As we grow you try to do it all and realize quickly that you can’t. So, how do you find the staff member that is fun, engaging, charming, a good educator, good with teenagers, organized to plan the logistics of all our trips and experiences?
Charity Matters: What fuels you to keep doing this work?
Avram Mandell: The feedback from our work reminds us that this is worth it. Knowing we are having an impact. I get the results I want from our students. I just got a text an hour ago of a picture of third-graders writing notes to people in detention centers. It turns out that the 9th grader that went to one of our trips at the border was sharing her experience with this third-grade class and the third graders were so inspired that they wanted to write welcome to America notes. That is why we do what we do.
Charity Matters: When do you know you have made a difference?
Avram Mandell: We brought a group of 6th graders to a recovery group. A 27-year-old woman shared her journey with our students. After her story, the 6th grader said to the woman, “You are such a strong woman, we have so much to learn from you.” The little girl went on to say that she struggled with her relationship with her parents and told the woman what a great example of strength she was.
We create these experiences for teenagers on a weekly basis that students would not ordinarily have. The students learn that we are all just human beings. We all have so much in common and so much more to learn from one another.
Charity Matters: Tell us what success you have had and What has your impact been?
Avram Mandell: Our impact is the stories like the one I just shared. It wouldn’t be the statistics. When you show up at a nonprofit with a group of teenagers and recognize one of the volunteers and say, “Don’t I know you?” She says, “Yes, you brought me here three months ago and now I volunteer here.” Then you ask is she doing this for required community service hours and she replies, “No, this is just what I do.”
Charity Matters: If you could dream any dream for TZEDEK America, what would that be?
Avram Mandell: I would love to have our programming in different cities so we can affect other students with what we are doing. I would love to have more capacity to make that happen. There is a quote from a book called Ethics of Our Fathers that says, “You are not obligated to complete the work but neither are you free to desist from it.” We know the ripple effect of our work and those we impact is large.
Charity Matters: How has this journey changed you?
Avram Mandell: I have learned so much from our program. I know more about immigration than I knew before, I know more about homelessness than I knew before. I am more socially aware and socially engaged than ever before.
Charity Matters: What life lessons have you learned from this experience?
Avram Mandell: I think about my eulogy a lot. Eulogies are about people’s relationships and about people being there for one another. I think about the educational concept called design with the end in mind and the creators of this concept who wrote a book about what do you want your end to be? I think about my end.
What do I want the end to be? I want to see that my kids and students are volunteering their time and that they know they have an obligation to make the world a better place. You can not ignore the problem. That is my end. When my students have kids and take them to volunteer somewhere. When my students live their life with meaning.
CHARITY MATTERS.
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
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.
Sharing is caring, if you feel moved or inspired, please inspire another…
Each year more than 14 million children attend camp in the United States according to the American Camp Association. Sadly, this summer most children will not be attending their camps due to the pandemic. In the United States, there are over 12,000 camps and 8,400 of those are overnight experiences. In the face of COVID, children are not getting the benefits of independence, self-confidence, and new friends which camp provides.
Leaders are Adaptable
As many of you know I run a youth leadership nonprofit and the highlight of our summer is our Summer Leadership program. Our students (6th-8th graders) leave home for the first time and spend a few nights in college dorms. They learn who they can be and where they can go…. college. However, this past March in the wake of the COVID we were unclear about the path forward. Were we going to be able to host our traditional overnight camp? The answers were not clear.
At TACSC, we teach that leaders are adaptable. So adapt is what we had to do. Throughout the months of March, April and May we planned for two programs, in-person and online. It was a bit like writing two term papers knowing that one would have to be thrown away. In mid-May, we made the decision that we were going to have to go with our new plan for camp online.
How do you provide an amazing experience online?
For thirty-eight years TACSC has taught leadership with peer teaching. College students teaching high school students and high school students teaching middle school students. Our program is a combination of camp meets classroom meets kairos. How were going to provide this experience to three hundred students online?
First and foremost we realized that kids should not be parked in front of a screen on a summer day. They needed to be outside, riding bikes, swimming, and getting bored. So we decided that the camp would start at 3 pm and end at 8:30. That time of day when parents need a break and kids usually start saying, “I’m bored.” Our curriculum team went to work and we were off to the races.
We Did IT!
After months of planning, shipping camp in a box to 300 campers, we executed our plan. This week we took our 38-year-old program and took it online. I was beyond nervous but our college and high school staff worked for months to create a magical experience. Our students attended the equivalent of an online play (via Zoom) each day, went into their small group classrooms, played games, made new friends, and learned about leadership. At the end of the evening, students had reflection time and families came together for night prayers.
Is the online experience the same? No. Did we create connection, fun, and friendships? Yes. Did they learn? Absolutely! Most of all, we learned that in order to survive and thrive as a non-profit we needed to be adaptable. A skill not just for leaders but for all of us.
Charity Matters
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
While I didn’t interview any specific health care workers but rather organizations that support them, it is worth mentioning that our front line workers were THE true superheroes of 2020.
