Learn how your sponsorship or participation can help change the future

Whether in person or virtually

we run to bring awareness + support to the DESSH mission.

#Dash4DESSH brings the DeSanto-Shinawi rare disease community together. The ‘run’ is athletic-optional with a focus on fundraising and fun. DO I NEED TO RUN TO PARTICIPATE? Absolutely not! You can meet at the park, street corner, the beach, or anywhere – get out of the house and move. The participants in #Dash4DESSH can run/walk independently or on individual teams across the globe. We encourage everyone to wear our #DASH4DESSH t-shirt and take photos. 100% of the registration fee is set aside for DESSH programs, education, and research.

Country with registered DESSH patient

Why walk, run or meet-up?

Why donate? DESSH is a lifelong condition that significantly impacts the lives of those affected and their families. There is no treatment or therapy – YET! Together, we have the chance to fund life-changing research and increase global awareness. This research will lead to actionable treatments that will make a meaningful difference in the lives of those affected by DeSanto-Shinawi Syndrome.

Please join us for our worldwide DeSanto-Shinawi Syndrome run #Dash4DESSH

Sign up!

Questions?

  • Absolutely not! This is a walk, run, crawl, or roll event that is very relaxed for most participants.

  • Anywhere! This is a virtual event. You can set your own location around the world. Dash independantly at your desired location, or dash with a team at a set location.

  • Register up to the last date of the event, November 2. If you want to get a shirt or gear, please allow enough time for shipping!

  • Registration costs $25USD. Every dollar donated goes directly to DESSH Foundation programs and services that fulfill our mission. Your generous donation is tax deductible and will make a major difference in the lives of those affected by DeSanto-Shinawi Syndrome.

    There is a processing fee of $2.50 per signup. If a group signs up together, save by only paying one processing fee.

  • Shirts are not required for this event. However, wearing DESSH gear plays a huge part in raising awareness. Made with premium quality, you can wear them over and over again showing your support for the disorder.