THE DESSH FOUNDATION

Committed to Curing DeSanto-Shinawi Syndrome

WHO WE ARE AND WHAT WE DO

DeSanto-Shinawi Syndrome is a newly discovered genetic disorder characterized by developmental delay, hypotonia, behavioral problems, intellectual disability, feeding difficulty, and seizures. 

The DeSanto Shinawi community was created to help identify new patients, promote further research, and raise funds to aid in the treatment and cure of DESSH. 

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OUR STORIES

Life with a child who has DESSH is a beautiful adventure; a journey of challenges and triumphs. Let us share ours with you.

STUDIES AND RESEARCH

The first studies identifying the WAC gene mutation were published in 2014. Continuing research in genetics and specifically the WAC gene is paramount to find a cure.

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DONATE

One of our goals is to further our cause through ongoing research. With your generous donations and fundraising efforts, you have the capacity to help us in our endeavor to cure DESSH. Check back for upcoming fundraising events.

EVENTS

Keep current with the latest upcoming DESSH events and become a sponsor.

DESSH PATIENT REGISTRY

If you or a family member has been diagnosed with DESSH, let us know! By joining this registry you will receive information and communications dedicated to patients and families living with DESSH, including information about future DESSH clinics. The more we grow, the closer we are to realizing our mission.

MAILING LIST

Sign up for our mailing list and keep up with all of the latest DESSH Foundation news, including research, upcoming events, and more!