To help with your planning, please review this year’s Family Information Packet, which contains important details about the ‘United in Hope’ conference which will be held July 18-22 in Dallas, Texas.
You will find information about conference sessions including the Phelan-McPosium, Family Fun day, sponsorship opportunities and much more. The packet also includes information and a sign-up link for childcare.
We are pleased to announce that conference registration fees did not increase from our last conference in 2016. In addition, there is scholarship funding available to help ease family’s financial burden. The conference registration link is coming soon.
Blumenthal, of Sarasota, was most recently the director of the Healthy Families, Healthy Children and Healthy Fathers program at the Jewish Family and Children’s Services in Sarasota and has worked extensively in the rare disease and disability communities in Florida and New York.
Susan Lomas, the Foundation’s Acting Executive Director, will continue to serve as the President of the Board of Directors and chair of the Global Partners Committee.
This beautiful, short video will give you a better understanding of Phelan-McDermid Syndrome and the strength, love and perseverance of the families raising a child born with this rare condition.
Since 2012, the Seaver Autism Center at the Icahn School of Medicine at Mt. Sinai has been enrolling individuals with PMS in a clinical trial of IGF-1. The findings from the first pilot study were published here. Below is an update from Dr. Alex Kolevzon, the lead investigator, reporting findings from the second pilot study.
The purpose of this registry is to consolidate information from individuals with Phelan-McDermid Syndrome into a single database, which will be utilized by researchers to understand Phelan-McDermid Syndrome better. Sharing your medical data will make a world of difference.
Our First Ever Giving 22uesday was a Huge Success! We surpassed out goal! In just 24 hours, you helped the Phelan-McDermid Syndrome Foundation raise over $50,000. Your generous donation helps the foundation spur on scientific research in the search for a cure, helps support families and raise much need awareness for an incredibly rare syndrome.