Every Mile Matters: Join the Fight Against NF

When our daughter was diagnosed with Neurofibromatosis Type 1 (NF1), our world changed in an instant. Like many parents, we had never even heard of NF1 before, and we were suddenly trying to navigate this complex genetic condition that affects everyone differently.  We have been extremely lucky so far that she hasn’t had any major complications that too many others with NF1 face.  For us, the hardest part hasn’t just been the diagnosis itself, but the uncertainty that has come with it.  We worry about how it might affect her future – one that could include tumors, learning challenges, and multiple surgeries.  Regular medical appointments, screenings, and scrutinizing every little change in her body that would otherwise seem insignificant have become part of our everyday routine.  But through it all, our daughter continues to inspire us through her joy, courage and strength.  

I’m running this marathon for her and for the thousands of other families navigating the same fears and unknowns we felt on the day of her diagnosis.  Every mile represents hope for earlier diagnoses, improved care, and ultimately a cure. Your donation helps fund critical research and brings hope to families like ours who believe that our children deserve a future with fewer unknowns and more possibilities.

If you are able to make a contribution towards our fundraising goal of $2,600, $100 for each mile I run, you can do so below. Every dollar makes a difference in pursuit of a cure for NF.

Adam Spisak