What is SRS?
About Us
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.
SRS Stars
Brandon
Christopher
Cody
Connor
David
GIANLUCA
Jim
Joey
Levi
Luke
Miles
Samuel
Wyatt
Zac
Please Support the Snyder-Robinson Foundation by Making a Donation with PayPal
News
Million Dollar Bike Ride Pilot Grant Program Now Open
The Orphan Disease Center (ODC) at the University of Pennsylvania is pleased to announce the 2018 Million Dollar Bike Ride Pilot Grant Program. The program is now open and offering 39 different research grant opportunities focusing on 23 different rare diseases. This program provides a one‐year grant to support research related to a rare disease represented in the 2018 Million Read more about Million Dollar Bike Ride Pilot Grant Program Now Open[…]
Greenwood Genetic Center Hosts Rare Disease Workshop
“In December 2017, the Greenwood Genetic Center (GCC) convened and hosted a workshop in Greenwood, SC in association with the Snyder-Robinson Foundation. Participants in the workshop included nationally-recognized basic scientists, physicians who work with patients with SRS, representatives of companies interested in developing therapeutics, and leaders from the SRS Foundation representing the interests of families.” Read more about Greenwood Genetic Center Hosts Rare Disease Workshop[…]
Million Dollar Bike Ride Registration Open for 2018
The Penn Medicine Orphan Disease Center (ODC) will host the 5th Annual Million Dollar Bike Ride on Sunday, May 20th, 2018 to raise money for rare disease research. The Million Dollar Bike Ride brings over 500 cyclists and volunteers to Penn’s campus to ride either 13, 34, or 72 miles starting in the city, and ranging across the Greater Philadelphia Read more about Million Dollar Bike Ride Registration Open for 2018[…]
Support SRF on #GivingTuesday
PRESS RELEASE Contact: Katia Luedtke The Snyder-Robinson Foundation 703-533-9844 Katia.Luedtke@Snyder-Robinson.org The Snyder-Robinson Foundation Joins the Global #GivingTuesday Movement Pledges to Fund a SRS Research Grant Award McLean, VA – The Snyder-Robinson Foundation has joined #GivingTuesday, a global day of giving that harnesses the collective power of individuals, communities and organizations to encourage philanthropy and to Read more about Support SRF on #GivingTuesday[…]
In Memory of John F. Gallagher
The Snyder-Robinson Foundation offers its deepest condolences to the family of John F. Gallagher. John, of Saint Paul, Minnesota, was born on March 3rd, 1959 and died on October 28th, 2017 at the age of 58. John had SRS, along with family members: brothers, Michael (deceased), Ted and Edward, his cousin, Joseph Buckley (deceased), his Read more about In Memory of John F. Gallagher[…]
Meet the Stars of Snyder-Robinson Syndrome!
Snyder-Robinson Syndrome (SRS) is a rare and complex disorder. Thanks to Katia L. for compiling this video of our SRS Stars! who live boldly and courageously fighting SRS every day.
Orphan Disease Center brings communities, researchers together to fight rare illnesses
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[…]
SRS T-shirts for Sale!
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 SRS?
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?[…]
4th Annual Million Dollar Bike Ride
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[…]