Snyder-Robinson Foundation
@Snyder_Robinson
The Snyder-Robinson Foundation is a nonprofit organization with a mission to advance research relating to Snyder-Robinson Syndrome (SRS) & related disorders
ID:904076229342527489
https://snyder-robinson.org/donate/ 02-09-2017 20:19:04
276 Tweets
163 Followers
260 Following
In honor of #RareDisease Day , The Jackson Laboratory recently launched a new e-book chronicling the #RareDisease odyssey through beautiful imagery and storytelling. Check out the new resource for the community here: bit.ly/3uo5NoM
We’re featured in a new resource from The Jackson Laboratory called The Rare Disease Odyssey. Check it out! In honor of #RareDiseaseDay coming up on February 28, we’re excited to share this resource with you!
Visit jax.org/personalized-m… to download a copy today.
Countdown to #GivingTuesday ! For the next few weeks, we are featuring a Star a day. Our SRS Stars come from 22 countries, and counting.
Today's Star is Arnaud, who lives in France. Arnaud is #SRStrong !
#givingtuesday2021
#SRStrong
#curesrs 💙💚💙💚
#snyderrobinsonsyndrome
Countdown to #GivingTuesday ! For the next few weeks, we are featuring a Star a day. Our SRS Stars come from 22 countries, and counting.
Today's Star is Jesper, who lives in Norway. Jesper is #SRStrong !
#givingtuesday2021
#SRStrong
#curesrs 💙💚💙💚
#snyderrobinsonsyndrome
Don't miss our Virtual #MDBR tomorrow! There is still time to register to support #raredisease #research ! Our virtual program will start at 11am EDT followed by a virtual spin class lead by our route coordinator Nikki Thiemann. Hope to 'see' you there! #pennmedmdbr2021
Today’s Million Dollar Bike Rider is the father of2 beautiful SRS stars. He is a founding member of the SRF & served as a member of the Board of Directors. This is his 6th MDBR on Team SRS! Thank you for your commitment to #curesrs 💙💚💙💚! #pennmedmdbr2021 socialfundraising.apps.upenn.edu/socialFundrais…
One week to go before the #pennmedmdbr2021 Levi’s health challenges, along with those of his fellow SRS ⭐️s, have been overwhelming this year. The MDBR is a way that together, we can #CureSRS 💙💚💙💚 #teamsrs #mdbr #snyderrobinsonsyndrome socialfundraising.apps.upenn.edu/socialFundrais…
Today’s featured Team SRS riders are the Natural History Study team who are riding in remembrance of Cody and in honor of Brandon. Together, we will #cureSRS 💙💚💙💚 #mdbr #pennmedmdbr2021 #snyderrobinsonsyndrome #raredisease #teamsrs socialfundraising.apps.upenn.edu/socialFundrais…
Team SRS celebrating our rock star rider with Snyder-Robinson Syndrome! He’s showing us what determination looks like. Go Cooper! Together, we will #CureSRS 💙💚💙💚 #pennmedmdbr2021 #mdbr #raredisease socialfundraising.apps.upenn.edu/socialFundrais…