Snyder-Robinson Foundation

The Snyder-Robinson Foundation is a nonprofit organization with a mission to advance research relating to Snyder-Robinson Syndrome (SRS) & related disorders

[Snyder-Robinson Foundation @Snyder_Robinson]

You can now sign up to attend the 2022 SRF Conference in Grand Rapids, Michigan! https://t.co/sIIGWUW1up

[National Organization for Rare Disorders (NORD) @RareDiseases]

In honor of #RareDiseaseDay, @jacksonlab recently launched a new e-book chronicling the #RareDisease odyssey through beautiful imagery and storytelling. Check out the new resource for the community here: https://t.co/7GvAmh0qMR

[Snyder-Robinson Foundation @Snyder_Robinson]

We’re featured in a new resource from @jacksonlab 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 https://t.co/jtnVcgnzD5 to download a copy today.

[Snyder-Robinson Foundation @Snyder_Robinson]

Happy Holidays!

[Snyder-Robinson Foundation @Snyder_Robinson]

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

[Snyder-Robinson Foundation @Snyder_Robinson]

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

[Snyder-Robinson Foundation @Snyder_Robinson]

Save the dates: The Snyder-Robinson Foundation is hosting our 3rd annual SRS Conference on June 20-21, 2022 in Grand Rapids, Michigan. We'll see you there!

[Snyder-Robinson Foundation @Snyder_Robinson]

The Medical Management of SRS document is now available in 10 languages: https://t.co/GMfvl4PCH8

[Snyder-Robinson Foundation @Snyder_Robinson]

Congratulations to Susan Scott for winning the SRF Outstanding Volunteer Award. Susan is always dedicated and eager to help the Foundation and other SRS families anytime help is needed. We greatly appreciate her commitment!

[Snyder-Robinson Foundation @Snyder_Robinson]

The Million Dollar Bike Ride in Austria 🇦🇹 is underway! Go Team SRS!!! #curesrs💙💚💙💚 #mdbr #snyderrobinsonsyndrome #AUT #mdbrpennmed2021

[UPenn Million Dollar Bike Ride by ODC @MDBRide4Rare]

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

[Snyder-Robinson Foundation @Snyder_Robinson]

Today’s rider is the father of an SRS Star ⭐️, a founding member of the SRF & is the Executive Director of the SR. We are thankful for his tireless efforts on behalf of our stars. He has held onto the hope that together, we will #CureSRS💙💚💙💚 #mdbr #pennmedmdbr2021 #TeamSRS

[Snyder-Robinson Foundation @Snyder_Robinson]

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 https://t.co/SUM7JR1NiF

[Snyder-Robinson Foundation @Snyder_Robinson]

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 https://t.co/NgS93ubeGq

[Snyder-Robinson Foundation @Snyder_Robinson]

Congratulations to Dr. Mary Jo Kutler for winning the SRF Outstanding Collaborator Award due to her key role in the ongoing Natural History Study, the Health Care Provider’s document, & availability to assist other treating physicians with their SRS patients around the world.

[Snyder-Robinson Foundation @Snyder_Robinson]

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 https://t.co/Y6mnhKi9db

[Snyder-Robinson Foundation @Snyder_Robinson]

Congratulations to Phil Taylor for winning the SRF International Collaborator Award. Phil is an SRS dad and has contributed to the Snyder-Robinson Foundation’s growth in many ways, including by representing SRF at the Canadian Organization for Rare Disorders (CORD) Conference.

[Snyder-Robinson Foundation @Snyder_Robinson]

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 https://t.co/4moI1uzjV7

[Snyder-Robinson Foundation @Snyder_Robinson]

Less than 3 weeks away from the Million Dollar Bike Ride! Today's rider is from Austria, riding in her 2nd virtual MDBR. She & her amazing family have been incredible supporters since her son was diagnosed with SRS. We are working so hard to #CureSRS 💙💚💙💚 #pennmedmdbr2021