What is SRS?
The Snyder-Robinson Foundation is a 501(c)(3) nonprofit organization that is dedicated to furthering knowledge about Snyder Robinson Syndrome (SRS) through the acquisition and sharing of information with families, medical professionals and researchers. The Snyder-Robinson Foundation was formed in 2014 by the parents of 6 children diagnosed with SRS. We formed a connection after reaching out to one another through mutual doctors, social media, and one another.
Dedicated to Advancing Medical and Scientific Research.
Formed by Families of 6 SRS Patients.
Making a Worldwide Impact for an Ultra-Rare Disease, called SRS.
Donate to the Snyder-Robinson Foundation
This article is reprinted here with permission. Written by Lauren Hertzler, it was originally published by the University of Pennsylvania’s Penn Current here. The only one of its kind, Penn’s Orphan Disease Center in the Perelman School of Medicine was established in 2011 to promote the development of therapies for a variety of rare diseases. Read more about Orphan Disease Center brings communities, researchers together to fight rare illnesses[…]
The Snyder-Robinson Foundation is currently having a T-shirt sale to benefit SRS research and help improve lives of those affected by SRS. Help us spread awareness of Snyder-Robinson Syndrome and support us at the same time! Your T-shirt purchase will support SRS research that could lead to a treatment or cure for people living with Read more about SRS T-shirts for Sale![…]
What is Snyder-Robinson Syndrome? SRS is a rare genetic disorder, characterized by intellectual disability and developmental delays. These delays may affect speech, mobility, and cognition. SRS may present muscle and bone abnormalities, and other challenges with normal development. Many people with SRS are thin and have low muscle mass. SRS causes skeletal problems, particularly osteoporosis. Read more about What is SRS?[…]
The Penn Medicine Orphan Disease Center (ODC) will host the 4th Annual Million Dollar Bike Ride on Saturday, May 20th, 2017 to raise money for rare disease research. The Million Dollar Bike Ride brings over 600 cyclists and volunteers to Penn’s campus to ride either 12, 33, or 73 miles starting in the city, and ranging across the Greater Philadelphia Read more about 4th Annual Million Dollar Bike Ride[…]
The University of Pennsylvania Health System (Penn Medicine) announced the recipients of the 2016 Million Dollar Bike Ride (MDBR) research grants. Two of these grants were awarded for Snyder-Robinson research. Congratulations to Dr. Schwartz and Dr. Fierro! Research Award #1 Charles Schwartz, PhD Greenwood Genetic Center Snyder-Robinson Syndrome pilot for $53,000 Title: Role of Mitochondria Read more about Penn Medicine Awards 2016 MDBR Research Grant Awards for Snyder-Robinson Syndrome[…]
The Amazon Smile program is operated by Amazon.com for qualifying non-profit organizations. Amazon donates 0.5% of the price of eligible purchases to the charitable organizations selected by customers. For more information about Amazon Smile, please visit org.amazon.com. The Snyder-Robinson Foundation has been accepted into this program, and is now able to receive donations, based on Read more about Amazon Smile Program Adds the Snyder-Robinson Foundation[…]
Dear MDBR Team Captains, The 2016 MDBR Grant Program is now open! We have now posted the Request for Applications (RFA) on the Orphan Disease Center website, here. http://www.med.upenn.edu/orphandisease/rare-disease-overview.html You may use this link to distribute the grant opportunity to those in your network who are interested in applying. Remember, these grants are open Read more about Million Dollar Bike Ride Open Announcement[…]
FOR IMMEDIATE RELEASE: THE SNYDER-ROBINSON FOUNDATION AWARDS PREDOCTORAL FELLOWSHIP TO CHONG LI, UNIVERSITY OF MIAMI GRADUATE PROGRAM OF HUMAN GENETICS McLean, VA – The Snyder-Robinson Foundation is delighted to announce that it has awarded a Predoctoral Fellowship to Chong Li of the University of Miami Graduate Program of Human Genetics and Genomics. Read more about The Snyder-Robinson Foundation Awards Predoctoral Fellowship[…]
The Snyder-Robinson Foundation was fortunate to receive a scholarship from the National Organization for Rare Disorders (NORD) to attend The Rare Diseases and Orphan Products Breakthrough Summit. The Summit featured over 20 speakers from the FDA, and included participation from over 80 patient organizations and the Pharma/Biotech industry’s foremost experts in orphan product innovation, investment Read more about The 2015 NORD Rare Diseases and Orphan Products Breakthrough Summit[…]
On July 16-17, 2015, the Snyder-Robinson Foundation (SRF) held its inaugural conference in Arlington, VA. This was the first time SRS parents, physicians, researchers, and patients were in the same location. Thanks to all who organized and participated in this great event!