BOARD OF DIRECTORS
Geraldine Bliss
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.
Abby Lievense
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.
Paulina Rychenkova
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.
Talya Emery Silva
Vice President
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.
Jenny Graham Beeson
Director
Jenny’s adult daughter Avery has suffered tremendously as a result of her frameshift variant on her SHANK3 gene. Several developmental regressions combined with refractory epilepsy, and severe GI and immune abnormalities have had a heartbreaking impact on Avery and her family’s quality of life. Jenny is passionate about finding treatments that will help reduce the devastating effects for the next generation of individuals born with Phelan-McDermid Syndrome.
Laura Hinrichsen
Director
Laura has over 24 years of strategic media planning and buying experience across all digital and offline channels. For the last two years, she has focused her professional talents exclusively on serving the nonproft community. Laura spent 15 years of her personal life supporting the ALS Association as a board member on a state and national level through advocacy and fundraising, which gives her unique perspective to bring to her work with CureSHANK. Laura is a childhood friend of Abby, one of the cofounders of CureSHANK and has been a supporter of the organization since its inception.
Grace LI
Director
Grace’s daughter Lily has Phelan McDermid Syndrome due to a SHANK3 mutation. Lily faces many challenges: sleep, digestion, extreme impulsivity.
Grace is inspired by what technology and persistence has done to bring treatments to severe genetic diseases. Grace’s hope is that as a community we can remove some of these obstacles together, to drive forward treatments for PMS.
Despite everything, Lily goes through life with a beautiful smile, follows the beat of her own drum, and brings joy to others around her.