Kim with Madi and CoCo, Madi’s favorite stuffy, who has been by her side at every MRI, CT scan and doctor appointment since 2019!
Kim Snipes joined the Children’s Tumor Foundation Board of Directors in early 2024. She brings a formidable array of expertise to her role on the CTF Board, with a rich background in technology leadership and operations management. Her industry acumen and insightful perspectives will be instrumental in steering the Foundation’s innovation endeavors, expediting the development of treatments for NF patients. Kim’s daughter Madison was diagnosed with NF1 at the age of four, and Kim, together with her husband Bryan encourage their daughter to defy her NF1 challenges and embrace new experiences in pursuit of her passions. We had the pleasure of speaking with Kim about Madi’s NF journey, what she hopes to bring to the CTF Board, and her generous matching gift during May.
Can you tell us about Madison’s journey to an NF diagnosis? What were the signs? How did you feel?
I think my story may be similar to a lot of parents who did not have NF in their family history. When Madi was almost 4 years old, my husband Bryan, and I noticed she was getting several, what I referred to at the time as, birthmarks. Madison is very fair skinned so they were easy to spot but given I have a couple of birthmarks, I, at first, thought nothing of it. And then I did what is so common in our digital world, I Googled something like “cause of multiple birthmarks.” That is when I first heard the term NF and my anxiety started. Madi also has what we now know is a small plexiform on the bottom of her right foot. We had pointed this puffy spot out to her pediatrician but no investigation was done until we went and discussed the “birthmarks,” which led to a dermatologist appointment, which led to a genetic counselor, which led to Madi’s diagnosis of NF1.
In a matter of a few months, our world, as we knew it, came crashing down. I honestly went into a kind of mourning for Madison, for her unpredictable road ahead and the randomness of it. And then I did what I have now heard from so many parents with NF fighters, I tried to quickly get educated and made ensuring Madi gets the best care possible a priority.
How old is Madison now? Any recent challenges Madison has overcome? Or accomplishments you/she wish to share?
Madison is now 9 years old, about to be 10 in August. Up until last summer, she appeared to be heading down the path of a more mild case of NF1 and then just when we emotionally started to let our guard down, we found out last summer that Madi has what is believed to be a low grade brain glioma. She has definitely been impacted by the latest NF1 obstacle as we work to find the right therapy for her. But she is a genuine NF fighter and does not let her current deficits stop her from fully participating in school and her passions. NF Fighters are so resilient!
What are her hobbies, interests, dreams? What makes her eyes sparkle?
While she knows she has a rare condition called NF1, Madi has not completely unpacked what that means to her life now and in the future. She knows she has something that requires A LOT of doctor visits and MRIs and is having a bigger impact on her life right now but she is also just an amazing 9-year-old girl who loves animals and would adopt every cat and dog she could if allowed. Thanks to her, we now have two dogs and a kitten, and soon may have a second kitten! We have already talked her out of hedgehogs, guinea pugs, horses and chickens!
Madi is also very creative and loves writing stories, making animated films, painting, and sewing. There is nothing she won’t try from an artistic perspective. Case in point, she wanted to sew a stuffy so I tried to get her patterns to use; instead she said “No Mom, I want to draw and make my own.” And she did! She made me an incredible dragon!
We are so excited that you’ve joined the CTF Board of Directors, bringing your vast experience and creative energy to our shared mission to End NF. What motivated you to join the board?
First, I have to say joining the CTF board will go down as one of the most significant achievements in my personal and professional career. I discovered CTF when I started my quest for knowledge and wanted to ensure I was being informed by the most robust and scientifically accurate source. As a parent of an NF fighter, I have been the direct recipient of the very real impact CTF is making on advancing therapies for NF patients that would just not be possible without this organization.
While my family and I have been contributing via annual donations to CTF, I have wanted to do more but have been searching for the right HOW and this opportunity to participate on the CTF board was the perfect answer. I have a passion for my profession as a Chief Information Officer where I leverage technology to achieve business strategy, and I have a passion for CTF. This board opportunity marries these two passions. As a parent of a child with NF, I believe strongly in the mission of CTF and, as a businessperson, I am impressed with the approach CTF has taken to fighting NF and I feel I can contribute to that approach and make an impact.
Madi with her dad, Bryan
We are thrilled to share with the community that you have generously and graciously provided a match during NF Awareness Month. What does this month of awareness mean to you and to Madison?
Please visit ctf.org/donate to have your contribution matched dollar-for-dollar during NF Awareness Month.
