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
SRF Awarded CZI Grant
https://chanzuckerberg.com/newsroom/chan-zuckerberg-initiative-awards-13-5-million-to-drive-progress-against-rare-diseases/
Lands’ End Clothing and Apparel Now Available with SRF Logo
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 membership@snyder-robinson.org. 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, PhD, and Colleagues Publish SRS Article in Nature
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
SRF Adds EURORDIS Associate Membership
The Snyder-Robinson Foundation is now an associate member of Rare Diseases Europe (EURORDIS)! Learn more about EURORDIS at: https://www.eurordis.org
Board Election for Voting Members Starting 9/12
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 membership@snyder-robinson.org, to which you Read more about Board Election for Voting Members Starting 9/12[…]
SRF Adds CORD Affiliate Membership
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/
2019 MDBR Pilot Grant Program Now Open
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[…]
The Jackson Labratory and Snyder-Robinson Foundation Announce New Research Models for Snyder-Robinson Syndrome
Two new models created to study neurological developments in SRS, advance global understanding of this rare disease The Jackson Laboratory (JAX), an independent nonprofit biomedical research institute, and The Snyder-Robinson Foundation are pleased to announce that two new mouse models are now available for the study of Snyder-Robinson Syndrome (SRS) and for broader studies of Read more about The Jackson Labratory and Snyder-Robinson Foundation Announce New Research Models for Snyder-Robinson Syndrome[…]
Dr. Aamir Zuberi Presents SRS Research at a Gordon Research Conference
Dr. Aamir Zuberi from the Jackson Laboratory recently presented Snyder-Robinson Syndrome (SRS) research at a Gordon Research Conference (GRC). His research, in collaboration with Maximiliano Presa, Matthew McKay, and Cathleen M. Lutz, focuses on two new SRS mouse models – the G56S point mutation and a conditional knockout involving a specific section of the Spermine Read more about Dr. Aamir Zuberi Presents SRS Research at a Gordon Research Conference[…]
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[…]