Happy New Years everyone! I hope you had the best of holidays and are off to a great 2022. I’ve been thinking a lot these past few days about the New Year. I am historically someone who can’t wait to make my list of resolutions, excited by a blank piece of paper, goals, and a list. Type A all the way. Sad but true.
However, this year I don’t feel that way and it’s been perplexing. Why would I not get excited and hopeful about a new year and a chance to start anew? Honestly, I think the answer is that I am afraid. Afraid of having hopes, wishes, and dreams squashed. If you don’t dream them then they can’t be taken away, right? If you don’t write them down then maybe you don’t have to work so hard trying to achieve them. These past two years have definitely taken their toll in that department.
In late November of 2019, I was on the cusp of achieving something I had dreamed of for a decade. It was a pinch-me sort of moment and in an instant, something totally out of my control, temporarily suspended the dream. That was tough but still okay because 2020 was coming and we were going to relaunch this dream in March of 2020. Well, we all know how that went. I think for many of us big dreamers 2020 was a time for us to really throw ourselves all out. We were so sure that the new decade and year was going to be our year, THE one.
Last year, I admit I was a little gun shy in the New Years’ resolutions department. My attitude was a bit like control what you can control and let the rest go. I did that. We launched the Charity Matters Podcast, which was great. However, last year felt like a transition year. A transition from what to what remains to be seen but that is how it felt.
Now, here I am again with the blank piece of paper in front of me and 360 some odd days in this New Year and I am gun shy. Nervous, tentative, and a little scared. That is life, it is scary and not being in control for us control freaks is the scariest. If I learned anything from the last two years it is that I am not in control of anything but my decisions. As a result, I am deciding to face my fears and jump back into the ring in 2022.
This year, I am going to pursue my dream yet again. I am going to sit down and see what goals I can achieve, strive for, and work to make happen. I will do my best, celebrate the small steps forward and most importantly enjoy the journey of it all. At the end of the day, our resolutions are not about a list but they are a road map for the lives we want. If we don’t write down those maps then it is much harder to know the direction of our dreams.
Afraid or not, 2022 I’m coming for you. Hopes, wishes, and dreams. I hope that each of you is envisioning a joyous and magical New Year filled with everything you wish for. Happy 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.
As we get ready to say goodbye to 2021, I wanted to take a moment to look back at what we accomplished at Charity Matters this year. Last January we launched our podcast, which in itself was a huge accomplishment. In the past year, we have interviewed 31 extraordinary humans. Each story was a lesson in faith, resilience, courage, and compassion. These amazing nonprofit founders are the real heroes of our world in their quest to make life better for others.
While I have adored every conversation this past year, a few stood out especially from Season Two. I thought before we take our holiday break to get ready for Season Three we would take a moment to share a few stories that really touched our hearts this year. So let’s look back at some of the real heroes of 2021….
Love Not Lost Founder: Ashley Jones
Ashley Jones is the founder of Love Not Lost. Ashley shares her journey through grief with the loss of her young daughter and her transformational experience from loss to creating a remarkable organization that provides family photoshoots for the terminally ill. Her honesty and candor about grief are anything but sad. You will leave this episode inspired by the joy and purpose found from an unbelievable loss.
The Bumble Bee Foundation Founder: Heather DonaTini
Heather Donatini, aka Queen Bee of the BumbleBee Foundation. Heather and her husband Jason, established the Bumblebee Foundation in 2011 in memory of their son Jarren who was diagnosed with rare liver cancer at the age of three. Their mission is to inspire hope, faith, and the overall well-being of pediatric cancer families. Heather and her husband work tirelessly to serve pediatric cancer families. She is a lesson in resiliency and faith. She is truly remarkable and the work they do is just as inspirational.
The Be Perfect Foundation Founder: Hal Hargrave Jr.
I have been privileged to meet hundreds of truly amazing humans over the years. 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. 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.
Pancreatic Cancer Action Network President and CEO: Julie Fleshman
I have to admit I was a little intimidated meeting Julie Fleshman knowing what a huge organization she and her team had built. Under Julie’s leadership, PanCANgrew from one employee to 150. PanCAN has funded over $149 million dollars in research for Pancreatic Cancer and created a platform that has fueled incredible change for the Pancreatic Cancer community. Despite my fears, Julie was beyond amazing, passionate and so much fun to talk to. Join me to meet this inspirational leader and learn about her incredible journey in changing lives.
Raise The Barr Foundation Co-Founder: Lori Barr
Lori Barr is no stranger to inspirational seasons because much of her life has been based around her now-famous son’s inspirational football seasons. Lori is the proud mother of NFL Minnesota Viking’s outside linebacker, Anthony Barr. However, it is much more than his football career that makes her proud, it is Anthony’s work to serve others with their nonprofit, Raise The Barr that is truly inspiring. Lori Barr talks about her journey as a single mother to nonprofit founder and shares her story of raising Anthony as a young single mother. Learn how they decided to give back to help other single moms finish their education and support their families. Lori is pure sunshine and inspiration. This is a conversation you don’t want to miss.
There are millions of everyday heroes all around us. These five are just a small example of the millions who work in the nonprofit space and give their lives to serving and helping others. Each person is a reminder for us all that we get so much more when we give. As we look back at 2021 and reflect on what we accomplished at Charity Matters, we find ourselves asking what more can we do for our neighbors and communities in 2022? Thank you all for being a part of this wonderful community of caring compassionate people. We are so grateful for you all and wish you a most joyous New Year!
If you enjoyed today’s episodes, please connect with us:
“May Peace “be your gift at Christmas and your blessing all year through!”
Author Unknown
It’s here! Christmas Eve is here!
My gift for you this year is this sweet poem from Kay Hoffman:
The gifts I’d leave beneath your tree, Aren’t those that you can touch or see, No toys meant just for pointless play, But gifts to bless you every day.
The gift of friendship is warm and true, Is one that I would leave for you. Good health and happiness and cheer To keep you smiling through the year.
The gift of peace that comes from God, With a prayer to guide each path you trod. And when your heart has lost its song The gift of hope to cheer you on. These are the gifts I’d leave for you.
So may we, too, remember with thankful hearts the love that comes with each present we open and cherish the time with those that we love. Wishing you all the very merriest Christmas!
Growing up in Los Angeles, we really don’t think much about tornadoes. Yes, there are earthquakes but most people don’t worry about them because they catch us all by surprise. This past weekend, all of us were caught off guard by the extreme magnitude of loss in Kentucky and the surrounding states and counties from the devastating tornadoes. There truly are no words to imagine what these families are going through right now. One minute they were preparing for the holidays and the next moment they have lost everything.
As broken and sad as our country may be right now, one thing Americans have done since they arrived on this land was helping one another. It is in our DNA and who we are. I can think of no better time of year than now to lend a hand. I came across this list in USA Today and wanted to share it here. Maybe just donating a few dollars you have to help a family in need? Perhaps you want to help a family for the holidays or give that as a gift to someone you care about? I thought it was worth sharing with each of you, some of the kindest and most compassionate people I know. Please feel free to share it and thank you in advance for doing what we do best, care for one another.
West Liberty, Ky., March 19, 2012 –Little remains standing of this historic church in downtown West Liberty. FEMA is working with Commonwealth and local officials to remove debris and demolish condemned buildings. Photo by Marilee Caliendo/FEMA
A few ways to help …..
Team Western Kentucky Tornado Relief Fund
Gov. Andy Beshear has established a fund to assist tornado victims and begin rebuilding. Donate at secure.kentucky.gov/formservices/Finance/WKYReliefor by sending a check to Public Protection Cabinet, 500 Mero St., 218 NC, Frankfort, KY 40601.
American Red Cross
Visitredcross.org, call 1-800-RED-CROSS, or text REDCROSS to 90999.
Aspire Appalachia
Send donations to [email protected] or PO Box 1255, Jackson, KY 41339.
CARE
The nonprofit based in Atlanta is partnering with Louisville’s Change Today, Change Tomorrow to distribute food, water, and cash vouchers to affected families. Donate to the tornado relief fund here.
Global Empowerment Mission
The disaster relief nonprofit based in Miami is sending trucks of supplies to western Kentucky, in partnership with Racing Louisville and Louisville City Football Club. Donate funds at globalempowermentmission.org/mission/kentucky-tornadoes/.
The organization is collecting donations that counselors and social workers in Graves County will distribute to affected families. Donate at kentuckycounselingcenter.com/mayfield-fund/.
The Marshall County Nonprofit Foundation has established a Venmo account to take funds at @MCNPF.
Mercy Chefs
The nonprofit that serves meals following natural disasters has set up at His House Ministries, 1250 KY-303, Mayfield, Kentucky, and will distribute food over the next few days. Donate funds at https://mercychefs.com/donation.
Owensboro residents who want to donate supplies can take them to Green River Distillery, 10 Distillery Road, beginning at 10 a.m. Monday. Most needed items include water, baby formula, diapers, sanitizing wipes, sanitizer, gloves, and trash bags.
Jefferson County Public Schools
The largest school district in the state is holding a “Stuff the Bus” event to collect donations for western Kentucky residents. Drop off donations in front of the VanHoose Education Building, 3332 Newburg Road, from 7:30 a.m. to 4:30 p.m. every day this week.
Lyon County Courthouse
People with supplies to donate in Lyon County can drop them off at the courthouse, 500 W. Dale Ave., Eddyville. Officials are requesting trash bags, coffee, disinfectant wipes, work gloves, safety glasses, and gift cards.
Marshall County Tornado Disaster Relief
Call 270-703-2706 or 270-252-6530 to donate food, water, toiletries, cleaning supplies, and other items.
Veteran’s Club Inc.
Veteran’s Club Inc. will be collecting donations to send to Western Kentucky from noon to 7 p.m. Monday at Fern Creek Christian Church, 9419 Seatonville Road.
Suggested donations include “water, medical supplies, non-perishable food, heaters, warm clothing, large tents, and pet food.”Donations will be transported to Mayfield.
Clayton & Crume
The leather goods company, which began a decade ago in a Western Kentucky University in Bowling Green, is accepting donations via its website to support people and organizations in Bowling Green that need assistance. Any remaining donations will go to the American Red Cross.
Green River Distillery
The Green River Distillery in Owensboro is serving as a drop-off point starting at 10 a.m. Monday for locals looking for ways to help support tornado relief efforts in Western Kentucky.
As we wrap up Season Two of our podcast, I can think of no greater guest than todays to conclude this inspirational season. Lori Barr is no stranger to inspirational seasons because much of her life has been based around her now-famous son’s inspirational football seasons. Lori is the proud mother of NFL Minnesota Viking’s outside linebacker, Anthony Barr. However, it is much more than his football career that makes her proud, it is Anthony’s work to serve others with their nonprofit, Raise The Barr that is truly inspiring.
Photo cred- Janae Johnson photography
Join us today for an incredible conversation with Lori Barr about her journey as a single mother to nonprofit founder. Lori shares her story of raising Anthony as a young mother and how they decided to give back to help other single moms finish their education and support their families. She is pure sunshine and inspiration, it is a conversation you don’t want to miss.
Here are a few highlights from our conversation:
Charity Matters: Tell us a little about what Raise The Barr does?
Lori Barr: Raise The Barr’smission is to increase opportunity and economic mobility for single parents, students, and their children through education. What that looks like, is providing holistic resources and support to low-income single parents, students who are in pursuit of a post-secondary degree training certification. The end goal of securing a career that offers a family-sustaining wage. We know that education is one pathway out of poverty. So that’s the road that we’ve taken because it was inspired by our own experiences.
Charity Matters: What was the moment you knew you needed to act and start Raise The BARR?
Lori Barr: It’s kind of a combination of a whole lot of things and an intersection of all these life experiences that brought us to this point. Growing up Catholic, we were always taught very, very early on that when the basket passed that we put a little something from our own piggy bank into the collection plate. As a result, that very early experience of helping your neighbor and paying attention to the experiences of others.
Then all this stuff happens through life and I end up getting pregnant at the age of 19. I was going into my junior year at St. Mary’s College in South Bend, Indiana. So, I kind of had to reprioritize my life and figure out how I was going to take care of myself and my small child. Those experiences kind of fueled the vision for Raise The Barr.
In 2014, when Anthony was drafted in the top 10 of the NFL Draft, we held a youth football camp. It was free and for the local community to get to meet Anthony. He was kind of a local star and he wanted to bring all these people together. It was an amazing day, we had over 300 Kids, 150 volunteers, and all of these people coming together. After that experience, he and I sat down and said, “Wouldn’t it be cool if we could harness this energy, and this enthusiasm, with your platform to really do something big and have a big impact on families like ours?” That’s where Raise the Barrwas born.
It really started from our own stories and experiences. What we originally thought was let’s just start a scholarship fund for single moms like me, who are trying to do something to support their family but they may need a little support. We thought that support looked like a scholarship. Although that is still part of our overall programming, that isn’t even the tip of the iceberg of what single parents need in order to persist through post-secondary, it’s just one part of it.
Charity Matters: What are your biggest challenges?
Lori Barr: Right, it is hard work. I think that recognizing what your limitations are, is humbling. It puts you in a place to realize that we need to kind of stay in our lane. For us, it was recognizing that one of our biggest challenges was diverse revenue sources. Our biggest funder could not be Anthony. We needed to be sustainable and we really had to dig to create diverse revenue streams.
Our second biggest challenge would be brand awareness. It really is about folks learning about you and coming up with a plan of how you’re going to market your product. In order for people to get engaged, you have to start with building a relationship and building trust. That’s brand awareness, trusting who we are. When you see our logo, when you hear tackling poverty, we want you to think about Raise the Barr.
Charity Matters: What fuels you to keep doing this work?
Lori Barr: The families we serve, the relationships that we’ve built, and the belief in our mission. Also, knowing that this works and that we are having an impact. Seeing the results of our early work, that’s what keeps us going. That’s what when I’m lying awake at night thinking, oh my God, I need to do blah, blah, blah, and I remember why we’re here. It is one step at a time. And, you know, we’re doing good work and we keep that in mind every step of the way.
Charity Matters: Tell us what success you have had and what your impact has been?
Lori Barr: 99% of our scholars have earned a degree or graduated. When we talk about increasing economic mobility, the annual income on average of an applicant, when they come into the Raise The Barrfamily is about $15,000 annually. Upon leaving and securing a career, the average income is $64,000 a year. So there’s a huge increase, and they can now support themselves and their family moving towards true prosperity.
For us, it’s totally about the stories and where they are now. A real quick story of Tanya. She is a Native American single mom who grew up in poverty. Father in prison, a mother struggling to make ends meat and college was not in her plan. She became a mom at a young age. And, like me, she decided she better get into school and figure something out. She went through community college and ended up transferring to a university. Today, she is now being invited by the American Indian Science and Engineers Council to speak and present at their conference. She is a chemist and will graduate this December. Her son is a fourth-grader, he’s achieving above grade level, three grades above with reading and math. Those are our success stories. That’s the impact that we’re having.
There are so many more stories like Tanya that we have and that we really celebrate because these are lives that are changed. That we can be a little part of that change, and create hope and opportunity to me, that’s a huge success.
Charity Matters: If you could dream any dream for your organization, what would that be?
Lori Barr: I think mine would be so similar to so many other small nonprofits out there. The dream is that we have all the resources that we need to do the work that we do. Our dream would look like us being able to really provide the resources needed to single parents, students everywhere, so they could succeed. That might look like something practical, like an endowed scholarship, that also might look like having strong partnerships with post-secondary partners. There are little things like that, which I think would help us continue this work, and really have an impact and really start to crack generational poverty.
Charity Matters: What life lessons have you learned from this experience?
Lori Barr: I’m a teacher at heart, that’s what I was trained to do, and I went on to pursue a master’s degree in counseling and psychology. So, I would say that I think I’m a pretty good listener. This has taught me to listen more, and talk less. And it’s taught me to really be more thoughtful about how I approach my own life. I think about the experiences of others. Somebody else’s experience is just as valuable, if not more than our own, and so listening, thinking, and letting that help our decision-making.
As a sports mom, I always use a sports analogy but really learned to focus on how to build a championship team. Bringing the right people on board, all with different skill sets. As a single parent, so often I carry the burden completely on my own, and decision-making all by myself. It was not really, within my experience for 29 years to say, I need to bring others into this to really help us have a great impact. And that’s changed for me.
I’m just happy for folks to inquire and to share what we’re doing. A big part of increasing our impact is raising that awareness and really building that championship team.
CHARITY MATTERS.
New episodes are released every Wednesday! If you enjoyed today’s episode, please connect with us:
“Remember that the happiest people are not those getting more, but those giving more.”
―H. Jackson Brown Jr.
Yesterday was Giving Tuesday which means officially that the season of giving is upon us, a time of year when we feel kindred spirits towards our fellow man. City streets are decorated and the clanging of the Salvation Army bell fills us with joy as we drop a few dollars in the shiny red bucket. For about forty days a year, we are called upon to be charitable. Why is giving only expected just once a year? More than that, how can we incorporate a little holiday season throughout our entire year?
Why We Give
We give gifts to those we love throughout the holidays for a number of reasons. First, we want to show those that we love by giving them something that will make them happy. Another reason we give gifts is to acknowledge our appreciation to someone such as a business associate, a neighbor, the dry cleaner, or anyone who makes your life better. When we give these gifts it is typically the gift giver that receives the most joy in the giving. Charity is no different. It is the giver of a gift that feels the resounding joy and goodwill from making another’s life better.
Where to begin?
For many of us, we want to help but often don’t know where to begin. While dropping a few dollars in a red bucket at the holidays is nice it is not a long-term solution to incorporating charity into your life. Like any lifestyle change, it takes a few things to begin. First and foremost, is your goal or intention. What do you hope to accomplish? Do you want to find a like-minded group of people to volunteer with? Perhaps something has happened recently in your life and you would like to find a way to help an organization that helped someone you care about. Maybe you have been the recipient of someone’s kindness and would like to pay it forward. Or perhaps you are trying to be an example for your children. Think about what you would like to accomplish. There is no wrong answer.
The next step is to identify a cause or nonprofit organization. With 1.5 million charitable organizations in the United States alone, it can be overwhelming. First, find the area of interest, is it education, health, military? Fortunately, there is an abundance of online resources. For volunteering, there are great sites like VolunteerMatch.org or CatchAFire.org that match you with nonprofits based on your interest and location. PointsofLight.orgoffers a variety of online or virtual volunteering opportunities.
Make giving part of daily life
For people looking to incorporate giving more into a habit, there is a host of apps for your phone. The app Daffy helps you make giving a habit by setting up daily, weekly, or monthly giving goals and delivers the funds to your cause of choice. Other options are incorporating apps like Roundup App that round up your change and donate it to your favorite cause on purchases you make throughout the year. There is even an app that helps you shop finding sustainable products and brands called the Good Human App.
Here are a few tips to remember as we approach the season of giving:
Set a goal or intention for what you want to achieve. Volunteering, giving back, raising philanthropic children
Find an area of interest. Think about what is important to you? Health, education, military?
Do your homework. Utilize online resources and apps to find ways to incorporate giving into your daily life.
Make giving habitual by being consistent. Whether it’s a holiday tradition, something you do at birthdays, or every day, be consistent. Establish giving as a tradition and habit. The more you participate the easier and more fun it becomes.
Emphasize the joy and the experience of giving rather than money. Philanthropy is about being a part of something bigger than yourself. Make it a joyful experience and something that makes you feel great.
This holiday season; enjoy the process of giving in whatever ways you decide to participate. Ultimately, we get so much more when we give. With a few simple changes, you can experience the season of giving all year long.
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 the day that we take time to be thankful. This year, this day and this moment I am grateful for many things, my guess is for many of the same things you are; health, family, friends and for all the amazing nonprofit founders who continue to inspire and teach so many invaluable life lessons.
This year has been a challenging one for me personally with more loss than I was prepared for. Yet, every time
I have a conversation with one of these inspiring founders its as if someone hit a reset button for me that leads me to gratitude. Each founder has sacrificed their life to make others lives better. Every one them remind us all what really matters and just how much we have to be grateful for each and every day.
So today, I am grateful to each person who has come into my life and for all of the lessons they have taught. Most of all, I am grateful to each of you who continue to inspire, teach and motivate on this journey. To each and all of you, I wish you and your families a very joyous and Happy Thanksgiving!
Charity Matters
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
The world is a small and amazing place. More than that, the world is full of good people. One degree of seperation connected me to one of those exceptionally good people, Emily Rogath Steckler. Emily had a career in public relations when her best friend’s son, Leo, was diagnosed with a rare disease changing the course of so many lives.
Join us for a beautiful conversation about love, friendship, hope, and the incredible journey to find a cure to INAD for five-year-old Léo. Learn about the work that Emily and her best friend Deborah are doing to help millions with their amazing organization Bisous for Léo.
Here are a few highlights from our conversation:
Charity Matters: Tell us a little about what Bisous for Léo does?
Emily Rogath Steckler: Bisous for Léo is an ancillary arm of the Inad Cure Foundation. This is the only United States-based foundation set up to try to treat and cure a rare disease called infantile neuroaxonal dystrophy or INAD. In layman’s terms, it’s a cross between Parkinson’s, Alzheimer’s, and Lewy body dementia. The children who have Inad share a gene mutation with some forms of Parkinson’s and have the same parthenogenesis as those adults who have Alzheimer’s. It’s an ultra-rare disease where there are probably between 150 to 200 children worldwide who are currently affected. But because of the genetic links, the hope is that by treating the children who were affected, we could in turn help treatment and cure options for those who have Alzheimer’s, Parkinson’s, and Lewy body dementia.
Charity Matters: What was the moment you knew you needed to act and start Bisous for Leo?
Emily Rogath Steckler: Leo is the son of my best friend Deborah. Deborah and I went to high school and college together. We’ve just gone through life together. Deborah ended up winning this unbelievable internship for an interior designer in Paris. That led to her finding love at this firm and marrying this unbelievable French man named Anton. And together they had Leo.
Leo developed normally for about two years. After that, he started showing extreme signs of regression. All the skills he had learned from walking to talking, to feeding himself, and cruising, literally, everything began to deteriorate. So eventually, they turned to a geneticist, who was able to diagnose him with this ultra-rare disease called Inad. When he was diagnosed, we started doing the research to figure out what it actually meant, because admittedly no one had ever heard of this disease.
There are 50 million adults worldwide who are affected by Parkinson’s and Alzheimer’s, Lewy body dementia, and neurodegenerative diseases. As soon as that genetic link was made, we realized we had to take action. Actually, in 2007, my grandmother had passed away of Lewy Body dementia. It was horrible watching her deteriorate. To think that children would suffer the way that I saw her suffering, it’s inconceivable. As soon as you understand that these children are genetically linked to 50 million adults who are actively suffering currently from these neurodegenerative diseases. Why isn’t everyone not rallying around the children? So we founded Bisous for Leothree years ago.
Charity Matters: how Did you get The Name for your organization?
Emily Rogath Steckler: We had a trip scheduled to visit Deborah the day after Leo was diagnosed. We went to their apartment and almost instinctively, I think my daughter Chloe picked up that something was off. So we walked into the apartment and she went right over and gave Leo a kiss. I snapped a picture. I just sat there looking at them thinking, if only we could kiss this thing and make it better. At the moment that the photo was taken, I didn’t even know what the thing was, but I knew somehow kisses would need to be involved in helping the cause. Bisous is the French word for kisses.
Charity Matters: What are your biggest challenges?
Emily Rogath Steckler: Getting people to listen long enough to understand that by treating the rare disease, we can potentially help so many millions of people worldwide. I think people’s attention spans are pretty short these days. When you think back to when aids came onto the scene, there was an education factor. You never really think of a pro when talking about a deadly disease. But the pro in that instance is that so many people were affected by AIDS, that they had to pay attention.
In this instance, there are only a couple hundred children who are affected. Once you are able to understand that the children are the purest form of this mutation. The adults who have early-onset have experienced more life, they have more environmental factors, they have sun exposure, they’ve consumed alcohol, they have caffeine, and you know, these children are pure. So getting people to understand that and me relaying it in as few words as possible, is really a clutch thing.
Charity Matters: What fuels you to keep doing this work?
Emily Rogath Steckler: We haven’t achieved our goals yet. So until there is a treatment or cure, I have no intention of stopping. These children are the missing puzzle piece of this larger neurodegenerative equation, and it is scientifically proven.
Charity Matters: When do you know you have made a difference?
Emily Rogath Steckler: There’s so many, and I consider every victory, big or small to be a victory. I mean, this podcast is an example, you’re using your platform to help me get the word out, which is really half of the challenge. It’s education, and it’s funding.
Charity Matters: Tell us about your success and your impact?
Emily Rogath Steckler: I’d say the biggest impact has been the awareness raised and generated through our Kisses for Leo campaign Prior to the launch of it, there were very limited resources. We’ve had so many wonderful celebrities who have lent their voice and their kisses to the cause. Everyone from Lady Gaga to Eva Longoria and Laura Dern. They’ve all taken a minute to post their kisses on social media, send their kisses in, and it every kiss posted furthers this awareness factor. They obviously have much larger platforms than we do. The fact that there is such grace that they would take a minute to lend their voice and say this cause is valid. And with this kiss, I support this work and educate you. I mean, that’s a huge impact.
Charity Matters: If you could dream any dream for your organization, what would that be?
Emily Rogath Steckler: Obviously to eradicate the disease entirely. I would love for a larger organization to want to work with us to help further the science. Again, there is such a proven link between Parkinson’s and Alzheimer’s and Lewy body dementia. If any of the larger foundations that are working on those causes said,”Yes, we agree that these children are important to the work that we are currently doing.” It would be such an immense help because as you said, the funding is a huge issue. Every dollar raised we put back towards medical advancements. If a larger organization or foundation said we understand why these children are so vital and we would love for them to be a part of our work. I mean, my heart would just explode. It would be so good.
Charity Matters: What life lessons have you learned from this experience?
Emily Rogath Steckler: . I’ve learned so much but really not to take health for granted. I’d say that’s the biggest thing, I am guilty of probably having taken it for granted in the past. Now every day that I wake up and I’m healthy and my family is healthy and my children are healthy. It’s no longer just a small thing that I take in stride. I’m very grateful for that.
Charity Matters: How has this journey changed you?
Emily Rogath Steckler: I have more perspective. I feel how short and tragic and beautiful life can be. This is obviously a horrific thing for any family to face but I have found such beauty in humanity. I’ve been so comforted that I have received calls from friends from high school who I haven’t spoken to in 20 years. So I have had my faith in humanity restored.
CHARITY MATTERS.
New episodes are released every Wednesday! If you enjoyed today’s episode, please connect with us:
Today is Veterans Day. A day we honor those who served our country and sacrificed so much for our precious freedom. The story on today’s podcast is an incredible family legacy of service. Justin Gracieux uncovered old documents that showed his grandfather’s 14-year military service during World War II and beyond. However, the official military records of thousands of veterans were destroyed in a 1973 fire. The fire destroyed the major portion of records of Army military personnel for the period 1912 through 1959. Join us to learn the incredible adventure one grandson has gone on to right a wrong and in the process honor those who have served our country.
Photo Credit: L for Louie the Lens (Monrovia, California)
Justin has founded the nonprofit organization Oath to Country Foundation to provide support for our Veterans. This inspirational conversation about family, love, and service brought me to tears more than once. Justin’s story, commitment, and determination to serve those who have so bravely served us is an inspiration for us all. Take a listen.
Here are a few highlights from our conversation:
Charity Matters: Tell us a little about what The Oath To Country Foundation does?
Justin Gracieux: Our mission is to foster a community of connectivity and collaboration with partnerships and volunteers to educate on advocate for and strengthen veterans, military, and first responders’ mental health. We also provide street-side resources for our Veterans that end up homeless in Southern California. Oath to Country Foundation is also sponsoring combat veteran psychotherapy treatment sessions provided by a Board Certified Clinical site Colleges.
Photo Credit: L for Louie the Lens (Monrovia, California)
Charity Matters: What was the moment you knew you needed to act and start Oath to Country Foundation?
Justin Gracieux: The story begins during Covid. in September of 2019, I was at my parent’s house and my mom called me into her room. She said, “Here’s a folder.” It was an old vanilla envelope kind of thing. My mom said, ” Open it up and see what you want to do with this?”. So I opened it up. That’s where I found this letter written by my mom when she was 17.
To whom it may concern:
I hope that you can be of help, and refer me to anyone that will read this letter. My father, Joe B. Montoya, was born on June 23, 1927. He was a veteran with more than several honorable discharge certificates that I can remember. My father was a very hard worker and a good father to me. And that is why I’m here today, I vowed that I would have him a burial that he thought he was given. My father has been deceased since October of 1983. I’ll try and make a long story short, there was a fire and I know my father’s discharge paperwork was burned. When I lost my dad, it was a promise to him to get a copy of his papers and have him a burial service with full honors along with being buried with the veterans of the United States. He now lives in a cemetery, with no one knowing his battle to serve our country. There was no flag or knowledge of him in the service, with approximately 14 years of his life dedicated to this country. I need someone to help me find his past. My family tried, as long as we could to postpone his burial. And to find his service records. Photos of him are enclosed.
My mom said, “I called Washington DC, and nobody could hear me cry for help.” So I took this folder, opened it up. I noticed that there was a lot of information that I could use to my advantage to step back into that arena that my mom did at such a young age, to fight for his veteran recognition, and 14 years of service.
Photo credit: L for Louie the Lens (Monrovia, California)
So right around this time, I started interviewing friends and family members who served our country through multiple wars. I started conducting these interviews, to put together these stories. Because the story of my grandfather wasn’t accurately passed down through the generations, I felt as though it was my duty to pay it forward. I needed to tell and archive the stories of these Veterans.
I remember meeting a gentleman who served in the Navy. Our conversation really opened my eyes to what motivated them to serve. The experiences they had, the fun experiences, and the traumatic experiences. I learned a lot about war and what it has done and what it does to our American soldiers. The PT, post-traumatic stress, depression, anxiety, isolation, and ultimately suicide. This really opened up my heart and my mind, to what it really means to serve. This was the foundation for The Oath to Country Foundation. Shortly thereafter, I filed the paperwork with the State of California in March to start our nonprofit and go full speed ahead.
Photo Credit: L for Louie the Lens (Monrovia, California)
Charity Matters: What are your biggest challenges?
Justin Gracieux: I remember one night, and this is before it was officially filed. I remember praying, I was in bed. All I could think about was the nonprofit how it’s gonna work. I had a lot of self-doubt stepping, into this role. I remember saying, “You know, God, I’m coming to you because I’m scared. I’m nervous. I don’t I know I have a heart for this. I want to do it. But I don’t know how I’m going to do it. Because I never served.” And I said,” If this is what you want me to do, and to do Your will. I said, just open the doors for me and I will go through them and I will never look back. I said.” Just help me. Help me. Help me see that this is the mission that you want me to serve.”
Charity Matters: What fuels you to keep doing this work?
Justin Gracieux: We perceive challenges as opportunities, with our nonprofit. We are looking at the glass half full because we have so many opportunities to rewrite the course of history for our heroes. We can do right in the world, serve others, and pay it forward and save lives. That is our fuel to our cause because we’re here for the right reasons and we’re here at the right time. We want to have an everlasting impact on the mental health of all of those around us.
Photo Credit: L for Louie the Lens (Monrovia, California)
Charity Matters: Tell us what success you have had and What has your impact been?
Justin Gracieux: Our impact is bringing our community together for various types of programs. Recently, we hosted our second beach yoga for mental health. We bring together the community, our military, veterans, first responders for a day on the beach. We’re conducting our 22-mile challenge. So, we either run or walk 22 miles along the California coast. 22 miles for 22 veterans. I run it with 22 pounds, signifying the lives taken by way of suicide every day. What we’re also doing is we’re sponsoring psychotherapy treatment sessions for our combat veterans. We are sponsoring gym memberships for our first responders, Veterans Military, across various gyms here in Southern California.
Photo Credit: L for Louie the Lens (Monrovia, California)
Right now we’re running multiple programs. I think one of the more specialized programs that we’re actively involved with daily is, is providing street-side resources for our homeless veterans here in Los Angeles County. Just a couple of weeks ago, we put together approximately $4,000 worth of resources, with items such as hygiene products, clothing, tents, insect repellent supplies, and more. Living there on the streets has its challenges. So we’re helping our Veterans who sleep on the sidewalks outside the VA with the rodent issue that they’re faced with daily.
Charity Matters: If you could dream any dream for your organization, what would that be?
Justin Gracieux: To end the war on suicide. We’re doing everything we can every day to prevent the next suicide from occurring. I mean, we’re in it for a long fight. We won’t give in we won’t back down. And we have the right people involved in this organization to help accomplish that. We’re just taking it one day at a time right now because this battle that we’re faced with isn’t easy.
Photo Credit: L for Louie the Lens (Monrovia, California)
Charity Matters: What life lessons have you learned from this experience?
Justin Gracieux: I’ve learned that it’s our responsibility to honor the legacies that those who have paid the ultimate sacrifice for our country and for our freedom. It’s our responsibility to continue to honor the names of those that are no longer with us. We have to continue to rely on each other to really continue to amplify the message within our own communities and even in our own households, and really look after one another.
The after-effects of someone taking their lives and those that have to live with it have been affected by it tremendously. I know some individuals that are still impacted by those who have taken their lives, and it breaks my heart to know that they still miss their loved ones. And they always will. It never goes away. So heartbreaking.
Photo Credit: L for Louie the Lens (Monrovia, California)
Charity Matters: Do you have any last message for us on veterans Day?
Justin Gracieux: Let me tell you a little short story. The other day I left work, and I’m literally sitting in the driver’s seat of my truck. To my left, I see this gentleman sort of kind of rocking in his truck. And I was like, that’s a little weird. So I finally looked and this gentleman was looking at the sticker on my truck. All-around every window of my truck. I have Oath to Country Foundationstickers. This gentleman’s looking at a sticker. So I finally wrote on my window, this is a foundation to save our veterans from taking their lives.
And it was just like that because we’re both at a stoplight, he’s about to leave, I’m about to leave. Sure enough, he sits back down. And he turns his face, one eye was missing. He raised his arm to salute me and his hand was missing. When you ask about what motivates our mission? What propels us to keep going? When we think we’re not moving anywhere, it’s experiences like that, that remind us that God is sending these messengers to us, to keep going and to never back down from this fight.
CHARITY MATTERS.
New episodes are released every Wednesday! If you enjoyed today’s episode, please connect with us:
Some of my earliest memories were the stories my parents told me. My father is Irish and loves to tell a good story. While my mother loved to tell stories of our family’s history and read to us as children. I could never get enough. It wasn’t until years later when I realized that my gift of gab actually was also a gift for storytelling. For the past decade, I have been telling stories to you each week about remarkable humans here at Charity Matters.
So when Professor Biel reached out to me from USC Marshall School and asked me if I would talk to her class about storytelling and nonprofits, I was really excited. I love going back to my alma mater and more than that I love telling stories. Today, rather than a podcast I thought I would share a little about what I shared with the class this past week.
There’s an old American Indian Proverb that says, “Those who tell the stories rule the world”.
I’m excited to talk about the power of storytelling and how we use stories to learn, to connect, and to build relationships and ultimately businesses/nonprofits specifically. If you think about it, one of the first things we learn as children is stories. Our parents read us stories and we watched Disney stories in movies. Stories are part of who we are and where we came from. There is a story in all of us.
The best stories are true, they have a beginning, a middle usually with a conflict, and an ending we hope with a happy resolution.
So rather than introduce myself properly, I’d like to tell you a story….my story. the one that changed my life from having a career in the software business to becoming a nonprofit founder, a storyteller, and a person on a mission to make the world better one story at a time.
Spiritual Care Guild
We tell stories get volunteers, communicate our vision, connect a community, to raise money…because in the nonprofit world the product that we sell is humanity….and we don’t sell, we tell…stories. Stories of those we serve. The stories are the connective tissue for our organization. They are the threads that connect our quilt and in this case, the quilt is a nonprofit. To sell your vision you have to tell the story.
Neurologists have studied storytelling and there are three main things that happen to our brains when we hear stories like the one I just told you
We remember, our neural activity increases fivefold
Stories generate empathy, like the empathy we just had for the girl with her pink blanket because our brains generate more oxytocin, (OXY-TOE-SIN) which predicts how much empathy we have.
Stories bring us together- we all collectively felt that compassion for that family, the empathy, which is why we watch movies on dates. We just all shared an experience and felt like we were in that room with the little girl.
After a few years of working with an incredible group of volunteers to launch the Spiritual Care Guild, I began to wonder who were these other people who started nonprofits and why? What was their story? At the time there wasn’t People Magazine Heroes Among Us or CNN Heroes or Upworthy…I realized there were 1.5 million nonprofits in the US and I wanted to know who started them and why? So I decided to find these nonprofit founders and tell their stories.
Charity Matters
I realized that if I can help the helpers I could help the most people. My impact and my skills as a storyteller would do the most good. I also quickly realized that all of these nonprofit founders had the makings for a great story. They had a conflict; a struggle, an obstacle, and that they had overcome their adversity and used it to help others, the happy ending….which was the perfect recipe for great stories. Nonprofit founders wanted to tell the stories of their work and not necessarily their own which was often the most powerful story of all. I am still telling these stories and fascinated by them each week. These are my people, people who have given their lives to serve. They are true leaders.
This leads me to a key component of any business/nonprofit and that is leadership.
TACSC
In 2013, I took over a 32-year-old nonprofit in need of some updating. Their messaging and stories didn’t exist but what they did (and did well) teaching leadership did exist. So we started by defining the work TACSC does and sharing that message…in order to lead you to need to:
Have a vision, a plan
Be able to communicate that plan
Be a lifelong mentor
You can not lead unless you serve
We began with that message and went in search of stories from our alumni and then found stories from those students we were serving, what was their story? Those stories took TACSC from serving 300 children a year to 3,000 with only 2.5 employees. That is the power of a story and a message. Each of these stories built and rebuilt three brands. Two of which are nonprofits, Spiritual Care, Charity Matters, and TACSC. They all started with a vision, then a story to communicate that vision, each organization brings along mentors and all three based on serving others. Leadership and nonprofits follow the same path.
Remember the power that stories have to connect us, build relationships, and command the most influence in your community, nonprofit, or business. So if you do one thing with all of this …..think of what your story will be? How will you use your gifts to serve others?
Make your life a story worth telling!
CHARITY MATTERS.
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
We all know that October is Breast Cancer Awareness month but did you know November begins Pancreatic Awareness month? Believe it or not, November is just days away. A few weeks ago I was having lunch with a new board member of the nonprofit I work for. We were having a fantastic conversation about the nonprofit she works for called Pancreatic Cancer Action Networkor PanCAN.She asked me, “Why haven’t you interviewed PanCAN for Charity Matters?” My reply was, “I would love to!” Like that she had me introduced to PanCAN’s first employee, President, and CEO, Julie Fleshman.
I have to admit I was a little intimidated because under Julie’s leadership PanCANgrew from one employee to 150. PanCAN has funded over $149 million dollars in research for Pancreatic Cancer and created a platform that has fueled incredible change for the Pancreatic Cancer community. Despite my fears, Julie was beyond amazing, passionate and so much fun to talk to. Join me today to meet this inspirational leader and learn about her incredible journey in changing lives.
Here are a few highlights from our conversation:
Charity Matters: Tell us a little about what The Pancreatic Cancer Action Network does?
Julie Fleshman: PanCAN is a national patient advocacy organization focused on pancreatic cancer. Our vision is to create a world in which all pancreatic cancer patients will thrive. So every day, that is what we are focus on. We fund research and clinical initiatives, we provide patient services and we do government advocacy work in Washington, DC to increase the federal resources. And we have an amazing network of volunteers all across the country that are helping us to raise awareness, visibility, and funds for the disease.
Charity Matters: Tell us how you got involved and went from employee number one to CEO?
Julie Fleshman: I got involved 22 years ago now, it is hard to believe. In 1999, my dad was diagnosed with pancreatic cancer when he was only 52 years old. He hadn’t been feeling well, but they couldn’t really figure out what was wrong with him. At one point, he was told to go home and take some time because they thought he was just having indigestion. Unfortunately, it ended up being a diagnosis of pancreatic cancer. He only lived for four months after his diagnosis and we were devastated.
I had never heard of pancreatic cancer, we really didn’t have cancer in our family. And I could not believe that there was absolutely nothing that could be done that there were no treatments. We were basically told, go home and get your affairs in order. So after he died, I was mad, and I started to do some research back in those early days of the Internet. PanCAN had just been founded in 1999 by three people who had also all lost their parents the disease. One thing led to another, sort of serendipity, I ended up being hired as the very first employee in 2000.
Charity Matters: What Have been your biggest challenges?
Julie Fleshman: I think there are two sets of challenges. One is the challenge of this disease. It is a challenging disease scientifically. Certainly when PanCANwas founded, literally, there was very little known about even why it was challenging. So the baseline was really nothing. There was so little research happening anywhere in the country focusing on pancreatic cancer. So there was that challenge of how do we even attack this? What is the strategy? And what do we do?
Then there’s the challenge of the organization and the operations and raising money and what our programs going to be. And hiring staff and all of those things. I think we did a really good job in the early days of creating excellent programs, that we’re serving the pancreatic cancer community. Our patient’s services were literally providing services to patients and families. Also on the research side, really looking at the big picture and saying, “Okay, at this time, we’re small but where can we have the greatest impact with the least amount of dollars?” I think we did a good job being smart in those early days about what those things were. You know, we just feel very lucky that it is an amazing community, from the research community to the constituents, volunteers, and donors, who have helped us to continue to grow year over year.
Julie with Patrick Swayze’s widow, Lisa Swayze
Charity Matters: What fuels you to keep doing this work?
Julie Fleshman: I think although, the progress is never as fast as we want it to be. But you know, you meet people and you share their stories and you talk to a patient and maybe that they’re not going to beat it, but they want to be a part of helping to make sure that it’s better for future people. That just gives you that inspiration to say, we got to keep doing this for them. If they’re not here to get to be that voice, we have to be that that voice for them. And there are successes, right? It’s not maybe the big win that we all want that there’s a cure, but there are steps every day towards that. So you really have to celebrate sort of those small wins.
Charity Matters: Tell us what success you have had and your impact?
Julie Fleshman: Ultimately, we’re trying to change patient outcomes. So for cancer and looking at pancreatic cancer, we sort of use the five-year survival rate. That’s the kind of Capstone it doesn’t move very quickly, but it has moved from 3% when I started doing this, to 10% today. That is still unacceptable but is absolutely moving in the right direction.
Then you have to look at sort of all the things day to day. Like the research grants that we’re funding and when and those researchers go on to publish that work and that publish work changes practice. Then the next researcher who’s now going to take those that outcome and they’re going to add to it to get to the next step.
Just last year alone, we had 45,000 interactions with patients and families through email and phone calls and people attending our webinars using all of our different patient services. I know from the feedback that we get, how meaningful that is to people. Especially those families that connect with one of our case managers and utilize them throughout their journey that when that family member dies, usually our case managers get the most beautiful email or card from the family saying, thank you for being there with us through this whole journey and so even though the outcome isn’t what we want it to be yet they add to the making it a more positive experience.
I can see there is a pancreatic cancer research community today that didn’t exist. There was not a research community focused on pancreatic cancer 20 years ago. There are more resources being put towards the disease across the board and all of that is helping to drive and accelerate progress. I feel like every year now there’s sort of this major scientific breakthrough. That before it felt like it was a really long time between when it felt like we were making progress. You can definitely see the momentum is picking up and, and the rate of progress is much faster.
Charity Matters: How has this journey changed you?
Julie Fleshman: It is hard for me sometimes to believe it was 22 years ago that my dad died. I mean, really, it feels like a lifetime ago in some ways. And in other ways, I can still remember sitting on the couch next to them and having a heart-to-heart. Those are things when you lose a parent, or someone close to you, that are life-changing, and really do change the way you view the world.
I always think God, I’d love, of course, my dad to be back. But I also cannot imagine my life without PanCAN.This has become such an important part of who I am and what I do, and just everything, it’s so important to me. So I feel like, in this strange way, he gave me this amazing gift. Right? And it’s not just doing the work, but I feel passionate and committed to being a part of changing outcomes.
CHARITY MATTERS.
New episodes are released every Wednesday! If you enjoyed today’s episode, please connect with us:
I have to confess, I have never been on a dating site. Recently, one of my team suggested a site called PodMatch. While not a dating app, rather an app for connecting podcasters and guests. I admit, I was skeptical but willing to try. Through the most unexpected and roundabout way I had the privilege of being connected to today’s amazing guest, Ariel Nessel the founder of The Pollination Project.
Ariel is a successful real estate developer by day, a practicing yogi and an inspirational human being. You are not going to want to miss this incredible conversation about what inspired Ari to rethink philanthropy and create The Pollination Project.
Here are a few highlights from our conversation:
Charity Matters: Tell us a little about what The Pollination Project does?
Ariel Nessel: When you think about what is the most synergistic form of relationship in the world, people often point to pollination. The reason is because you can’t have a distinction between who is giving and who’s receiving in that relationship. That’s where the name, The Pollination Project, oriented from. Like our name, pollination is a process that starts out small but has a huge impact. Our theory of change is that we work on small grants. We are supporting individual changemakers who feel a unique calling to be of service in the world.
Our grantees do this work on the basis of volunteerism, as opposed to a place of occupation. We’ve given out over 4000 grants and most of the grants are $1,000 each. We also provide service to support our grantees in their unfolding journey of service. We’ve placed grants into over 120 countries. The commonality of all the things is that we are creating something that develops more compassion in the world. Compassion, for me, is defined as the longing to reduce the suffering of others.
Charity Matters: What was the moment you knew you needed to act and start The POLLINATION Project?
Ariel Nessel: I’ve been active in philanthropy, before founding The Pollination Project, as an as an advocate for things that I really cared about. Through that process I started giving and contributing to different groups that I thought were doing really good work in the world. My journey of philanthropy deepened but it wasn’t as fulfilling as I would have liked. I was writing bigger and bigger checks but I wasn’t feeling nourished inside by a bigger check. It was the intimacy I had with philanthropy that felt like a cog in the wheel. I felt like there was so much more to offer than financial capital.
So what came up for me was this question of how can I expand what I’m calling to offer? How can I feel more engaged in the world than a few minutes being generous, financially? How can I support and nurture and empower the most good from people? What came out of that was this idea that there’s probably some other people who want to do good in the world. How do we find those people, make them and acknowledge them? Then, how do we make them move from that point, too wouldn’t it be great if I did something about that?
So the idea that came out of it was to give one grant a day. Picking a whole network of people to work with in different movements who are asking these questions for themselves. Then to figure out which of those people are at the right point in their unfolding path to to be resourced with these grants to do something in the world. That became The Pollination Project.
Charity Matters: What are your biggest challenges?
Ariel Nessel: There have been myriad challenges along the way. Early on, it was the question of how do we find these people? You want to give a grant every day, you want to find good people. So how do we locate those people? Further down as it was unfolding, became how do we provide more than money? What is it that people really need? Other problems, that came up were questions like how do we change the focus for our grantees? We wanted to know who they become by accomplishing their project?
We’ve seen so many people who, as they grow their projects, their original motivation gets lost. Sometimes it becomes about building something, as opposed to like leaning into that seed within them that they cared so much about. How do we nourish that seed of caring?
Charity Matters: Tell us a little about your success and impact?
Ariel Nessel: I think one of things I’ve learned from my business experience is that what gets measured gets done. So it’s really important, what we measure what we’re paying attention to. For The Pollination Projectwe have how many grants we’ve given. We measure do they do what they set out to do? How many volunteer hours were provided in it? What do they write about how they were changed the process? Who was who was affected by their project? What percent of our dollars go to grant making versus overhead.?
The impact to be able to tell almost 5000 stories becomes really important to us. And even the stories that aren’t always a success. It’s not like it’s only worthwhile celebrating if you accomplished what you wanted to accomplish. Our failures often lead to greater success down the road. What do our grantees learn in the process of their mistakes? This is what’s beautiful about the $1,000 grants, they’re small enough that we don’t get attached to every one of them working out. What do we learn from the ones that don’t work out? Where do those people who try it and “fail”, what do they learn from the process?
Charity Matters: If you could dream any dream for your organization, what would that be?
Ariel Nessel: I think the biggest dream I have is knowing that we played an enormous part in uprooting apathy around the world. So that anyone who ever had their own dream of how they can use their unique knowledge to make the world a better place, does something about it. So that these change makers knew that someone saw them, acknowledged them and was there to resource them. That there were so many grantees around the world that it wasn’t just us but that people copied us all around the world. So that philanthropy wasn’t just done by giant organizations, but there were innumerable smaller positions and individuals resourcing anyone who felt a similar calling. I think that would be my dream.
Charity Matters: What life lessons have you learned from this experience?
Ariel Nessel: So many lessons but asking what do I want for the world? And how can I be a person who helps manifest that? How do I live as an exemplar of what I wish for the world? Because purpose is such a big part of my life, I’ve created this acronym on what to engage. The acronym is pursue.
P is for personal transformation. Where do I need to grow as a human being? I started The Pollination Project where I wanted to grow and be able to see the best in others. I wanted to grow having a daily practice of generosity and feeling a deeper embodied sense of service.
The U is for unique. Where am I uniquely positioned? What am I uniquely called to do? I felt really called to support changemakers.
The R is for relationships. What are the relationships I have? Which ones do I get to spend more time with those people I really care about and want to learn from?
The S is serendipity or synchronicity. What is life pushing me towards? What success are you manifesting without too much effort? Where is there a sense of ease like a finesse that comes from things?
The U is for understanding.
The E is for external transformation or efficacy. Asking, where can I have the greatest impact? So I try to integrate that with all these other parts of it. A big part of the worlds problem is apathy and indifference. One way to address that is to demonstrate that there are people who have moved beyond apathy.
Charity Matters: How has this journey changed you?
Ariel Nessel: I think that all of the above has really changed and made this path so much more joyful for me. This is why a harvest approach seems more appropriate to me than the activists. There’s not an exhaustion when you’re just going where there’s flow. You don’t get tired. Rather, it’s a regenerative energy. There’s a joy to giving, to service and life.
CHARITY MATTERS.
New episodes are released every Wednesday! If you enjoyed today’s episode, please connect with us:
This October, I wanted to begin with a throwback conversation to honor those who began what we now recognize as Breast Cancer Awareness Month. In my world, the more people you have helped the bigger the celebrity you are. Three years ago I had the privilege to talk to Myra Biblowit, the President and CEO of the Breast Cancer Research Foundation (BCRF). I was everything you would be when meeting your hero…nervous, anxious, excited, and truly thrilled to share her remarkable journey changing the lives of millions of women around the globe.
Our conversation was timely because just two days before we spoke, a friend of mine had a mastectomy. Myra was beyond lovely, compassionate, soulful, and truly inspirational in her commitment to prevent and cure breast cancer. Although October is Breast Cancer Awareness month, this disease doesn’t care what day or month it is. Every 2 minutes a woman is diagnosed with breast cancer. Myra, her team, and a remarkable group of people are all changing the game with their work. After our conversation, I kew that cancer doesn’t stand a chance with this beautiful lady starring it down.
Charity Matters: Tell us a little about what BCRF does?
Myra Biblowit: We wanted to put an end to breast cancer. Our goal was and is to have no more fear, no more hospital visits, no more side effects, no more needless suffering, and no more loved ones lost to breast cancer. The only way to achieve our goal to prevent and cure breast cancer is through research.
Charity Matters: What was the moment that The Breast Cancer Research Foundation began?
Myra Biblowit: BCRF started in 1993 but I met Evelyn Lauder in 1985 and we forged an incredible friendship. Evelyn called me and said that she had an idea to create a foundation that focused on breast cancer research. She was concerned after seeing the pace at which breast cancer research was moving. She had looked around the country and there was not one organization that was doing research with a laser-sharp focus. Evelyn said, “I can do this and if I can do it and I don’t it, it would be a sin. Will you help me?” She had a soul and a heart that was enormous. Working on the pink ribbon symbol she knew she could make this a ubiquitous symbol of the cause to get this issue out of the closet.
The story doesn’t end with creating awareness, it extends to harnessing dollars towards research to change the future. I told Evelyn, I would help her find an Executive Director and get BCRF off the ground. At the time, I was working at the Museum of Natural History. In 1993, BCRF began at Evelyn Lauder’s kitchen table with our dear friend Dr. Larry Norton of Memorial Sloan Kettering Cancer Center. Seven years later, I had had a few job opportunities arise and I reached out to Evelyn and Leonard Lauder for their advice as friends. Evelyn said, “Well this is a slam dunk. This is bashert! Yiddish for meant to be….last night the Executive Director told us she wanted to stop working.”
By Monday, I was the President of BCRF. Evelyn gave up the Presidency and became Chairman and Founder and I went to work for my darling friend. I started April 1st, 2001, and I told her I would take the organization internationally, raise a lot more money and create a strategic thoughtful grant program.
Charity Matters: What fuels you to keep doing this work?
Myra Biblowit: We lost Evelyn in 2011, and I do what I do in her memory and in her honor. BCRF is her legacy and I work hard to make sure that we are the gold standard. Our work stands as a tribute to her vision. Today we are the largest global funder of breast cancer research. We are the most highly rated breast cancer organization in the country. Evelyn had such vision and clairvoyance. Breast cancer was in the closet when we started. Thanks to pioneers, like Evelyn, breast cancer, and women across the globe, it is out there now.
The dollars that we are investing at BCRF are not only answering questions about breast cancer today but a multiplicity of other cancers as well. Evelyn would not have envisioned the relevance that BCRF would have.
Myra Biblowit and Dr. Larry Norton, photo credit Suzanne DeChillo
Charity Matters: When do you know you have made a difference?
Myra Biblowit: Since BCRF was founded there has been a 40% decline in breast cancer deaths worldwide. The proof is in the pudding. Truly we can tell you that BCRF has had a role in every major break thru breast cancer prevention, diagnosis, treatment, and survivorship as well as an advancing knowledge about other metastatic diseases.
When Evelyn and I were working together we were mainly talking about diagnosis and treatment. We knew then and know even more now that research is THE reason. Today that continuum begins with prevention and extends with survivorship. The connector is that research is THE reason, it is the glue.
Charity Matters: Tell us what success you have had at BCRF?
Myra Biblowit: I think it is important for people to know that breast cancer is rapidly transitioning to a manageable chronic disease. People need to not be fearful of the stories of the past from their mothers and grandmothers. Treatments are much more targeted. When a woman is diagnosed today they can try to find what type of tumor she has and then find the right treatment for that tumor type, which is huge.
We now know that breast cancer is not one disease but made up of four or five different diseases in terms of tumor types. Each one has more in common with other forms of cancer than with each other. Today’s treatment has a far greater likelihood of success and they are far less toxic.
One study that BCRF was involved with was the TAILORx, a major multi-year and multi-country study to determine what women needed chemo who had early-stage estrogen-positive breast cancer. We knew women who had a high score needed chemo and women who had a low score did not need it. We didn’t know for the 70,000-100,000 women in the middle range if they needed chemo or not. Today we now know that those women do NOT need chemotherapy. This study proved the power of research. These are the advances that change the future for our mothers, our daughters, and our friends.
Charity Matters: What is your vision for the Breast Cancer Research Foundation going forward?
Myra Biblowit: In the current year we raised $80 million dollars and we awarded grants of $63 million dollars to over 300 researchers across 14 countries. We could have funded more had we had more funds and we are the engine that tells researchers to take that chance.
When Evelyn died, we devoted a fund to metastatic disease by creating a Founder’s Fund. We want to use that fund to find more about metastatic disease. The more dollars we can give to our researchers the more breakthroughs we can make.
Charity Matters: What life lessons have you learned from this experience? How has this journey changed you?
Myra Biblowit: You know Evelyn gave me an opportunity to do something professionally that touches people’s lives profoundly. How lucky am I? Evelyn was grateful for everything that came her way. She was a child of the Holocaust and her family fled when she was an infant. Everything that she and Leonard achieved was a partnership. She was magnetic and wonderful and when we lost her, Leonard stepped in. I am filled with gratitude every day and for the opportunity to learn from the extraordinary Lauder family. What fed their soul was to make the world a better place and it was infectious.
Charity Matters
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
I love meeting new people and while Zoom isn’t always the best way to meet, somedays it just has to suffice. The reality is that an amazing conversation can happen anywhere, whether in person or online. Today’s conversation is just that, amazing. When you meet someone you haven’t met before, you honestly never know what is going to happen? This one had me in tears, in the best of ways and I hope it does the same for you.
Join us today for an incredible conversation with Ashley Jones, the founder of Love Not Lost. Ashley shares her journey through grief with the loss of her young daughter and her transformational experience from loss to creating a remarkable organization that provides family photoshoots for the terminally ill.
Here are a few highlights from our conversation:
Charity Matters: Tell us a little about what Love Not Lost does?
Ashley Jones: Love Not Lostis on a mission to revolutionize the way we heal in grief. We photograph people facing
a terminal diagnosis, provide community support tools and resources to help people support others,
and we train leaders in the workplace to create cultures of caring around grief and loss at work.
Charity Matters: Tell us about your earliest memories or experiences with philanthropy?
Ashley Jones: I have always had a heart to help people. As soon as I was old enough (around middle school), I volunteered in the kid’s ministry at my church and stayed involved for decades. Through a peer-mentorship program at my high school, I volunteered to help severely handicapped children at the local elementary school. After graduating, I went on an ArtsLink trip to support orphanages in Ukraine and also served neighborhoods in Northern Ireland through Youth for Christ.
When Compassion International came to my university, I signed up to support a kid in India. After my daughter died, I volunteered with Help-Portrait, which helped lay the foundation for creating my own nonprofit. I had zero experience starting a nonprofit and leading a charity, but I knew I would figure it out.
Charity Matters: What was the moment you knew you needed to act and start Love Not Lost?
Ashley Jones: As I photographed Kevin Hill on his very last day on earth, fighting Stage 4 Melanoma Cancer, I knew this was part of my purpose; helping other people through suffering and loss. When his wife, Rachel, shared the impact the photos had on her kids in their healing, I knew this work was important. I kept volunteering portrait sessions for families facing a terminal diagnosis and launched it into a nonprofit the day my husband came to me and said, “I love you and your giving heart, but we simply can not afford to keep giving everything away.” I knew I could find other people who wanted to help me give it all away to these families.
Charity Matters: What are your biggest challenges?
Ashley Jones: One of our biggest challenges is pioneering in a world that is taboo. People are reluctant to talk about dying and grief, let alone engage with it on a deeper level. Our first hurdle is getting people to connect with our mission. Another hurdle is finding people who are willing to give to support people in grief. It’s hard to understand the depth of impact if you haven’t been through it.
Covid was obviously a huge challenge. We lost close to half of our expected annual donations due to canceled events and people not giving (which I completely understand), and we’re still recovering from that. We’re hoping our virtual wine tasting event will be a big help this year!
Charity Matters: What fuels you to keep doing this work?
Ashley Jones: The thing that keeps fueling me to do this work is the impact. When I hear someone tell me that the photos we gave them helped them heal, or a support tool gave them the courage to reach out to someone to show them love, or I’m talking to someone and can see the “ah-ha” moment when something clicks and they have a moment of healing right there on the spot. It’s a beautiful thing, and that’s how this world is going to change for the better. Each one of us healing our wounds, one moment, one person at a time.
Charity Matters: Tell us what success you have had?
Ashley Jones: We’ve photographed close to 100 families now, impacting thousands of people through their friends and family grieving. We’ve given over 5,000 support cards out, not to mention the visitors and users on the digital version, HowCanILoveYouBetter.com… We’ve given thousands of empathy cards out to people to send to spread love and care through loss. And we’ve done it all on a shoe-string budget, but we’re facing max capacity and we really need to raise more to grow and serve more people.
Charity Matters: If you could dream any dream for your organization, what would that be?
Ashley Jones: As I dream for Love Not Lost, I imagine a world where everyone feels loved and supported in grief. A world where people know what to say and do, and collectively we help each other heal. I see Love Not Losthaving photographers in every major city across the globe. I see us being the number one place people turn to when facing a terminal diagnosis or loss of any kind. We will continue creating tools and resources to help meet unmet needs and build bridges to connect people with empathy and love.
Charity Matters: What life lessons have you learned from this experience?
Ashley Jones: I have learned some incredible life lessons on this journey so far, and I am sure there are many more coming my way. The first is that love heals. We all have wounds and we all experience loss. First, we need to love and care for ourselves; do our own work to heal before we can help others who are hurting. I believe hurt people hurt people, but healed people heal people. Changing the world truly does start with each of us doing our own work.
Charity Matters: How has this journey changed you?
Ashley Jones: This journey has broken my heart a million times over. But each time, I get to rebuild my heart. And each time, I find that it gets bigger and bigger. I have grown so much in empathy, understanding, giving people the benefit of the doubt, and seeing people’s pain first. I’m much slower to anger and much more open to possibility.
CHARITY MATTERS.
New episodes are released every Wednesday! If you enjoyed today’s episode, please connect with us:
