Board of Directors
Founder & President
Geraldine’s son, Charles, has Phelan-McDermid Syndrome, caused by a partial deletion of the SHANK3 gene. His severe form of epilepsy, Lennox Gastaut Syndrome, has had a devastating impact. CureSHANK was born from her promise to Charles to help him get better.
Founder & Treasurer
Abby's son, Darus, has a SHANK3 frameshift mutation on exon 21. Although he has a happy disposition, this condition has caused global regression and has hindered him from having any semblance of a typical childhood. Abby is committed to delivering treatments and cures to all that suffer with this dreadful condition.
Founder & Secretary
Paulina's daughter Daria was born with Phelan-McDermid Syndrome. From the moment of her birth, through her open-heart surgery, and years of therapy, Paulina never wavered in her conviction that disease-modifying treatments for neurodevelopmental disorders are possible. CureSHANK is a key step on the path towards such treatments.
A single extra letter in one
SHANK3 gene has had a devastating impact on Talya's son, Asa. He is physically healthy, but severely disabled by poor receptive/expressive language; autism; intellectual disability; self-harm; sleep disturbances; and regression. Talya is dedicated to improving quality of life for Asa and all who live with this genetic fate.