Together we can make a difference in the lives of those affected by DeSanto-Shinawi Syndrome.
Join others across the globe to raise critical funding for resources, therapies, and treatments. No matter where you are—lace up your sneakers, stroll with friends, jog with your pup, or dance your way through 3.1 miles. Every step you take raises awareness and support for families affected by this ultra-rare condition.
Celebrate and support families of those impacted.
We invite you to come together to honor our children, relatives, and friends with DeSanto-Shinawi Syndrome, while increasing awareness of this ultra-rare genetic condition.
Your contributions at work
The DESSH Foundation takes pride in the comprehensive stewardship of every dollar raised. We prioritize funding into three major categories: education, awareness resources and research. Our research is integral to understanding DESSH and uncovering new discoveries to help inform effective therapies.
“Marco is our little "X-man". He will not be like the others, but we understood thanks to him that the difference is a strength.”
— Marco’s Parents, France
Want to show your support for the DESSH community?
Very few people know about DeSanto-Shinawi Syndrome. DESSH themed clothing encourages conversation and opportunities for education. Our products are made of premium quality so that you can re-wear them over and over, even after the race! This year’s shirt features a zebra - the official symbol of rare disease.
