Our son Clark is the light of our lives. He loves to dance, play basketball, and watch Ohio State football. But more than anything, he loves his family.

In 2024, Clark was diagnosed with Sanfilippo Syndrome, a neurodegenerative disease that is like Alzheimer's in children. He will lose all the skills he has gained in his short life, suffer seizures and movement disorders, and eventually die in his teens. 

Currently, there is no FDA-approved treatment or cure for Sanfilippo Syndrome. But there is hope. Scientists are conducting more research than ever. Your support enables that life-saving research to continue until a cure is discovered.

What it felt like when we learned our child has Sanfilippo Syndrome…

Devastating. Being told our seemingly healthy boy has a fatal disease with no currently-available treatments felt like we were living in a nightmare that we could not wake up from.

How has Sanfilippo affected our child?

Fortunately, at this point, he has not displayed any of the most-common symptoms. He is still progressing in his milestones and learning at school. Our hope is to continue to give him as many opportunities to learn and gain as many skills as possible. That way, in the event a treatment or cure becomes available, he still has those skills.

How has Sanfilippo affected our entire family?

It has forced us to live each day to the fullest and focus on what is in front of us right now. We don't know what the future holds, but we know we can't miss out on the good times we are having now out of anticipation of what may happen.

Why are we asking you to donate to Cure Sanfilippo Foundation?

Research for a cure is funded by every-day people coming together to help give our kids a full and complete life. We can't do this alone. A cure is within reach and, with your help, we can make sure no family has to lose their child to Sanfilippo.