Jul 19, 2021 | Patient Advocacy
1. What is the Association for Creatine Deficiencies (ACD)? To create a unified community, the ACD was established in 2012 by parents of children diagnosed with a Cerebral Creatine Deficiency Syndrome (CCDS). The association is dedicated to three different creatine...
Jun 21, 2021 | Patient Advocacy, Societal Impact
1. What is the No Stomach For Cancer organization? In 2009, after losing two family members to stomach cancer and learning about the CDH1 genetic mutation that increases the risk of developing the disease, Karen Chelcun Schreiber founded No Stomach For Cancer (NSFC)....
May 19, 2021 | Patient Advocacy
1. What is the Cholangiocarcinoma Foundation? Like many non-profit organizations, a tragedy was the driving force behind the launch of the Cholangiocarcinoma Foundation. Stacie Lindsey, president and founder of the organization, was caregiver to her brother, Mark...
Apr 6, 2021 | Innovation, Patient Advocacy
1. What is the SYNGAP1 Foundation? SYNGAP1 Foundation is the leading non-profit patient advocacy group dedicated to improving the quality of life for patients and families affected by a SYNGAP1 gene mutation or variant. SYNGAP1 is a gene located in the brain that...
