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.
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)
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With the current developments of COVID-19, the Snyder-Robinson Foundation has decided to host an online event in lieu of the in-person conference scheduled for June. We are in the process of developing informative content and interactive virtual sessions with our SRF supporters and families. We will be hosting the virtual event the week of June Read more about The 2020 SRF Conference is Now a Virtual Event[…]
Due to the ongoing developments of COVID-19, UPenn’s Orphan Disease Center announced that this year’s Million Dollar Bike Ride is moving from an in-person gathering to a virtual event. Since we will no longer be meeting in Philadelphia on June 13, anyone interested in participating can register as a virtual rider to support Team SRS! Read more about The 2020 Million Dollar Bike Ride Now Virtual[…]
The Snyder-Robinson Foundations is pleased to announce its 2019 annual award winners. In 2019, SRF introduced an annual awards program to recognize outstanding individuals and their respective contributions to SRF. Award descriptions and citations follow. Snyder-Robinson Syndrome Outstanding Researcher Award Description: The Snyder Robinson Foundation directors, officers, and members on behalf of those individuals Read more about SRF Announces 2019 Award Winners[…]
Lands’ End clothing and apparel is now available with the SRF logo for Snyder-Robinson members. Please become a member at https://snyder-robinson.org/membership-form or email email@example.com. Pass along to your family and friends and encourage them to also join our Foundation. The Lands’ End storefront for SRF is available at the link below. Select ‘Apply Logo’ to selected merchandise to Read more about Lands’ End Clothing and Apparel Now Available with SRF Logo[…]
Fernando Fierro & colleagues recently published an article in Nature. The full title is: Modeling Snyder-Robinson Syndrome in multipotent stromal cells reveals impaired mitochondrial function as a potential cause for deficient osteogenesis. A link to the article is provided below: https://www.nature.com/articles/s41598-019-51868-5
The Snyder-Robinson Foundation is now an associate member of Rare Diseases Europe (EURORDIS)! Learn more about EURORDIS at: https://www.eurordis.org
Starting in on September 12, 2019, there will be an election for two new Directors of the Snyder-Robinson Foundation’s Board. The election will be open to Voting Members for two weeks, from September 12th to September 26th, 2019. If you are a current Voting Member, you will receive an email from firstname.lastname@example.org, to which you Read more about Board Election for Voting Members Starting 9/12[…]
The Snyder-Robinson Foundation is now an affiliate member of the Canadian Organization for Rare Disorders (CORD)! Learn more about CORD at: https://www.raredisorders.ca/about-cord/
The Snyder-Robinson Foundation is thrilled to announce that the 2019 Million Dollar Bike Ride (MDBR) Pilot Grant program is open and accepting Letters of Interest (LOIs) for a $69,318 SRS grant. “Research focus areas include new studies into understanding pathophysiology or mechanisms by which SRS causes disease, as well as corresponding treatment options. There is Read more about 2019 MDBR Pilot Grant Program Now Open[…]