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[…]

Polyamigos

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[…]

Million Dollar Bike Ride

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?[…]