Take Action

How can you get involved with SHINE Syndrome?

At SHINESyndrome.org, we strive to build awareness for our growing community as well as to help provide funding for researchers around the world who are searching for answers and working to unravel the secrets of SHINE Syndrome. Through sharing our stories on this site, increasing visibility on social media, and participating in fundraising efforts, we can connect with newly diagnosed patients, provide a community for the families living with SHINE, and assist in finding strategies and treatments for those in need.

Though not everyone will be able to contribute financially, we appreciate anyone willing to share the word about SHINE Syndrome on social media or among family and friends. Please consider finding us on Facebook, Twitter, or Instagram, and be sure to watch for any news and events!

Donate via Givelively

If you are able, please consider donating to our cause. All donations are tax deductible and contribute directly to SHINE Syndrome Foundation to help us fulfill our mission to improve the quality of life for children and families impacted by SHINE Syndrome through supporting collaborative research among international medical professionals, nurturing a family community, and raising worldwide awareness.

Visit Our Bonfire Store

We also have various apparel items available to help raise awareness for our community. All proceeds from sales go to the SHINE Syndrome Foundation. Visit our Bonfire page to get some SHINE Syndrome swag!