Loved by all who meet her Lesley Oslica is our November local hero for her tireless work for the Children’s Tumor Foundation.
For someone who has never heard of it, what is the Children’s Tumor Foundation, and what work do they do?
Children’s Tumor Foundation (CTF) is a national nonprofit organization with state or regional representation dedicated to finding effective treatments and supporting the millions of people worldwide living with neurofibromatosis (NF). The general name for a number of genetic conditions that cause tumors to grow along your nerves resulting in severe pain, disability and disfigurement. As a local Chapter, our goal is to raise awareness of NF in our community, which we hope will lead to support of our vision to End NF. We also aim to support our local families by providing resources, information and community support through local gatherings.
What is your involvement with CTF and what prompted you to get involved?
I am a member of the National Board of Directors as well as the Arkansas Chapter President. The prompting to get involved came after our daughter’s missed diagnosis from her pediatrician who was unaware of NF and its manifestations. Once I learned about NF and how common it was, I wanted to ensure that other parents didn’t have the same experiences and ultimately that all doctors in our community would be aware of NF. From that experience, I developed a great desire to fund NF research. Our family began hosting fundraisers and developing what is now the AR CTF. I work pro-bono for CTF to develop fundraisers, coordinate Chapter activities and serve as a patient advocate at the NF Clinic at Arkansas Children’s Hospital, which is held once a month for children with NF. When new families learn of our Arkansas Chapter, they are extremely thankful to know that there were others in their community experiencing this NF journey.
What has been the most rewarding part of being involved?
There are a lot of sorrows as well as rewards that come from working with and for people affected by NF. One of the most difficult aspects is the loss of one of our NF family members. Visiting with moms who have lost a child due to complications of NF couldn’t be more difficult.
On the flip-side of that coin are the rewards that come from being involved: like knowing your community supports the Foundation’s mission and has helped raise over $1.5 million since 2006, learning about the amazing research that is being funded through CTF, knowing that one of the new clinical trials is having a direct impact on shrinking a friend’s tumor, getting to know some of the world’s most wonderful philanthropists, and meeting so many amazing NF ambassadors are just a few of them. Plus, working with the largest non-government funder of NF research gives me a great sense of hope, and that hope is what drives me to work a great number of hours. The kids in this picture are the “real heroes.” They are the ones that inspire all of us to do good! Anytime I get tired or frustrated at work, I am reminded of all the kids with NF that are counting on us to make a difference for them. There are so many rewards for the work we do at CTF — it’s hard to call it “work.”
What advice would you give to someone looking to get involved with philanthropy?
Depending on one’s personality, the advice would vary. For someone like myself, who still breaks out in hives knowing that I need to ask people for money, I would advise them to remember that we live in an amazing community, filled with people who are ready, willing and able to help. I would follow that advice up with a reminder of how important it is to find the right organization to get involved with. Find one that suits your personality, one that your own personal belief systems align with, one that you believe in wholeheartedly. When you find that type of organization, you are willing to do whatever it takes to help them advance their mission — even if it means asking for donations!