Million Dollar Bike Ride - Snyder-Robinson Syndrome
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The Snyder-Robinson Foundation
Fundraising goal $20,000.00
Recent donations (15 donations)
Name DescendingX Amount
Anonymous $1000.00
Ann and William Dee $500.00
Matching donation from the Choice Hotels Foundations! $1500.00
Grubner Gerhard $50.00
Anonymous $100.00
Top donors (15 donations)
Mr. Michael Raymond This amount includes donations indented below $2000.00
   John McManus
Mrs. Barbara Luif This amount includes donations indented below $1950.00
   On behalf of Stadtkapelle Gloggnitz, Huatara Dirndln, Landjugend Gloggnitz and Theatergruppe Raach am Hochgebirge    $1500.00
   Grubner Gerhard    $50.00
   Anonymous    $100.00
Matching donation from the Choice Hotels Foundations! $1500.00
On behalf of Stadtkapelle Gloggnitz, Huatara Dirndln, Landjugend Gloggnitz and Theatergruppe Raach am Hochgebirge $1500.00
Come ride with us in Philly on May 20 2018!

Snyder-Robinson Syndrome
Snyder-Robinson Syndrome (SRS) is a very rare genetic disorder. SRS causes intellectual disability, seizure disorders, hypotonia, osteoporosis, and other medical problems. Some SRS patients can't walk or talk. Its effects can be devastating.

Why SRS research is so important
SRS is the only disease known to be caused by an imbalance of polyamines - small molecules that are present in every living organism. They're necessary for normal development of brain, bone, and other cells- yet little is known about how they function. So the study of SRS presents a unique opportunity to understand polyamines and the role they might play in many common diseases like epilepsy, osteoporosis, Alzheimer's and other neurodegenerative diseases.
The future's so bright, you gotta wear shades!
This is our third year riding in the Million Dollar Bike Ride. Your donations have made research grants available to Dr. Fernando Fierro at the University of California at Davis, where he's studying how SRS causes osteoporosis and how it may be treated; to Dr. Schwartz at the Greenwood Genetic Center, who's studying many different aspects of SRS using cells from a number of actual SRS patients; to Dr. Bob Casero at Johns Hopkins, who's trying to normalize polyamine ratios in SRS cells using nanoparticles; and to Dr. Grace Zhai at the University of Miami, who's studying potential SRS treatments in fruit fly models - and who, with her doctoral candidate and colleague Chong Li, recently published a breakthrough article describing how anti-oxidants may be used to treat SRS - and they have significantly improved Connor's quality of life!

With all this momentum, Dr. Cat Lutz and Dr. Aamir Zuberi at Jackson Labs are now creating SRS mouse models that we may use to test the safety and efficacy of potential treatments - and a brilliant multi-disciplinary group of Polyamigo super-researchers are collaborating on our most promising paths forward. And with RURO's generous provision of software and support, our SRS Patient Registry & Natural History Study is well underway! Our progress over the past three years has been amazing thanks to your donations and all the help we've received with our research program!

We're very grateful to the Penn Medicine Orphan Disease Center for this unique and wonderful opportunity to further our SRS research - and to Dr. Neal Boerkoel, who made this all possible!

100% of donations are used to fund scientific & medical research
Your donation will go directly to fund important research into SRS that has the promise to improve the quality of life of SRS patients, and to try to shed light on a number of more common diseases - and the Penn Medicine's Million Dollar Bike Ride will match your donation!

For more information about the Million Dollar Bike Ride, please see the Penn Medicine Orphan Disease Center's website at

To learn more about the Snyder-Robinson Foundation, please visit our website at:

To ride with our team, please contact Michael Raymond at

    Donation messages
    We recognize David Marchetti and send good wishes to all of the Marchetti riders! With a our love, Ann and Bill Dee --Ann and William Dee
    Keep up the great work! --Mrs. Barbara Luif
    2018 is going to be the best year ever for SRS research - let's make this the year we find a treatment or find the cure! --Mr. Michael Raymond

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    Post fundraising progress | Anne Marie Del Rossi, Director, Data Services | 215.898.3062
    2929 Walnut Street, Suite 300 Philadelphia, PA 19104 | Superuser