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.
Number of Research Grants & Awards through the Snyder-Robinson Foundation
Years as a Registered Member of the National Organization for Rare Diseases (NORD)
Hundreds of Miles Riden to Raise Money for Rare Diseases, Including SRS
Confirmed Children Affected by SRS (approximate)
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
Voting is Now Open for New Board of Directors
Voting is now open until March 18, 2019 to Voting Members to elect the new Board of Directors of the Snyder-Robinson Foundation. All votes must be submitted by email to membership@snyder-robinson.org. As a reminder, Voting Members are those of you who signed up for membership as a parent/legal guardian, a sibling, a carrier of SRS, Read more about Voting is Now Open for New Board of Directors[…]
Registration for the 2019 MDBR Now Open
Registration for the 6th Annual Million Dollar Bike Ride on Saturday, June 8, 2019 is now open! Please follow this link to register: www.alumni.upenn.edu/MDBR2019 and share it with your friends and family to join a team! Registration “With Fundraising”: The fee for registration “With Fundraising” is $25.00 Please remember that if you select registration “With Fundraising”, there is a required fundraising minimum of $250. It Read more about Registration for the 2019 MDBR Now Open[…]
Research Grant Awarded to Wood
We’re very excited to announce that Tim Wood of the Greenwood Genetic Center has received a $54,774 Million Dollar Bike Ride research grant award for his project: Expanding the Breadth of Metabolite Analysis for Snyder Robinson Syndrome. We’d like to congratulate Tim, and thank him and the entire Greenwood research team for helping us find Read more about Research Grant Awarded to Wood[…]
Research Grant Awarded to Fierro
We’re very excited to announce that Fernando Fierro of the University of California, Davis has received a $54,774 Million Dollar Bike Ride research grant award for his project: Skeletal stem cells to treat the bone defects of patients with Snyder-Robinson Syndrome. We’d like to congratulate Fernando, and thank him and his entire research team for Read more about Research Grant Awarded to Fierro[…]
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.