Nobody knows SDS as intimately as SDS patients and their direct caregivers such as their parents. And everyone has something valuable to bring to the table. 

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We want to give all patients and their families a voice and an opportunity for action. Beyond joining the registry to share your data - the most critical component in enabling research -  you can get involved in a variety of ways.

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• Contribute your passion and skills to our efforts or your local SDS support organization.

• Raise awareness about SDS in the medical community and your own network. We provide a wide range of support materials.

• Provide peer to peer support by reaching out to fellow SDS families. You can reach them through Facebook, local events, and through your local SDS support group.

• Raise funds. Our programs depend critically on your support.

• Become an advocate and ambassador. We can help you document and share your story widely, in a way that will make you proud and feel empowered. Check out our awareness resources and reach out to us today.