Connor's Story

Our son Connor Francis Raymond was born on December 4, 2007, the youngest of our three children. Shortly after his birth, Connor began developing medical problems, one after another, including failure to thrive, camptodactly, torticollis, plagiocephaply, low muscle tone, global developmental delays, a heart defect, a seizure disorder, visual disturbances and severe osteoporosis.

As these issues arose, Connor underwent an endless battery of testing, scans, doctor and specialist visits. He was seen by experts at four large research institutions. No one could figure out what was causing his challenges. Connor spent the first five years of his life undiagnosed, a medical mystery. But Connor was not a mystery to his family. He was an open book – a sweet, lovable little boy who was engaging, happy most of the time, and a joy to be around.

When Connor was five, genetic testing revealed that he had a spontaneous gene mutation in a gene that really matters – the SMS gene.  He was the 21st person in the world ever to be identified with Snyder-Robinson Syndrome (SRS). Read More

What We Do

Research

As a patient-led research network, our research priorities are guided by SRS individuals and their families to focus on the issues most directly affecting them.

Support

We offer online support through our SRS Family Group and welcome newly diagnosed families with information kits.

Act

We participate in rare disease awareness events, unite as volunteers to advance our mission, and host a SRF Conference to educate and connect SRS researchers, clinicians, supporters, and families.

SRF News

May 19, 2021 in Annual Awards, News

SRF Names the Winners of The 2020 SRF Awards

The Snyder-Robinson Foundation is thrilled to announce the winners of the 2020 SRF Awards. The winners were chosen based on their outstanding contributions to the Foundation through research, community outreach,…
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August 21, 2020 in News, SRS Research

R. Grace Zhai, SRF Award Recipient, Promoted to Senior Associate Dean at UM

The Snyder-Robinson Foundation is excited to congratulate R. Grace Zhai, Ph.D, on her recent promotion as the Senior Associate Dean for Basic Science Research at the University of Miami Miller…
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April 6, 2020 in News, SRF Conference

The 2020 SRF Conference is Now a Virtual Event

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…
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