The Cute Syndrome Foundation Is Funding PCDH19 Epilepsy and SCN8A Epilepsy Research!
It wouldn't be surprising if you have never heard of PCDH19 Epilepsy or SCN8A Epilepsy. These rare disorders, which are both caused by genetic mutations, are just in the early stages of being diagnosed and understood. Our team at The Cute Syndrome Foundation is working hard to help bring these disorders into the light, to fund the dedicated and talented researchers working to better understand them, and to support the families who are affected by these disorders.
You are part of that mission--your donations, volunteer time, and social media support are essential to our momentum.
In two years TCSF has made amazing progress with funding PCDH19 research. In under two years we have raised more than $120,000 for PCDH19 Epilepsy research and awareness. Read more about the PCDH19 research we are funding.
In mid 2015 we carried out a joint campaign with two other SCN8A Epilepsy organizations, Wishes for Elliott and SCN8A-Help Adeline Find Answers. We raised $20,000 to fund an SCN8A Registry.
We believe that the best way for rare communities to make progress is to collaborate with other similar organizations--we are strongest when we are united! We are proud members of the SCN8A partnership: SPEAK--SCN8A Partnership for Epilepsy Awareness and Knowledge. We are also proud members of The International PCDH19 partnership: PEARL--PCDH19 Epilepsy Awareness and Research League.
The Cute Syndrome is registered as a tax-except organization under IRS section 501(c)(3). Our tax identification number is: 46-2699066
On December 5th in Philadelphia about 85 guests--including seven children with SCN8A, 35 family members, and over 40 researchers and clinicians--met for the Cute Syndrome's first SCN8A Epilepsy Researcher, Clinician, and Family Gathering. Read more...