Our Story

To us, DAND is personal

Understanding DEAF1

Our Mission, Vision, and Priorities

DAND (DEAF1-Associated Neurodevelopmental Disorder) is a disease characterized by a mutation of the DEAF1 gene. Although the types of mutations and symptoms expressed vary from person-to-person, autism spectrum disorder, intellectual disability, behavioral issues, and communication issues are all extremely common.

There are less than 150 known cases of DAND worldwide, which has made securing funding for research extremely difficult. Rare diseases are often overlooked in favor of diseases that affect a larger number of people.

Consulting medical professionals about DEAF1 can oftentimes feel isolating.
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Together, We're Stronger

Many of the families affected by DAND have joined together via a Facebook group, and we have decided to take the fundraising efforts into our own hands. There is a dedicated team of researchers at Southern Illinois University whose primary focus is studying DAND, and our group’s aim is to support their research in any way we can.

With 160+ members and counting, our (private) Facebook group is a growing community of parents, siblings, families, and friends touched by DAND in some way. We document events from our daily lives, sharing stories, asking questions, and showing up for one another.

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Be it through organizing, financial contributions, or ideas for research contracts, there’s no better time to lend your support. Awareness is everything when it comes to ultra rare genetic disorders. A little help can go a long way.

Support the DAND Foundation

Please help us improve the lives of these amazing children. When you give to The DAND Foundation, you are funding breakthrough research and treatment for patients with DAND and helping to support their critical medical services and programs. Thank you for donating today and joining our fight!

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