Welcome to the Snyder-Robinson Foundation
Currently, there is no approved treatment that targets the biochemical imbalance in polyamines in individuals with Snyder-Robinson Syndrome (SRS). Patients rely on supportive care to address the symptoms of SRS. Researchers have identified an existing drug, eflornithine (also known as α-difluoromethylornithine or DFMO), that may improve the polyamine imbalance in individuals with SRS. Currently, eflornithine is used to treat children with Bachmann-Bupp syndrome, another disorder affecting the polyamine pathway. Eflornithine has been extensively studied in children with neuroblastoma. Pediatric clinical trials in the U.S. are also investigating eflornithine as a means of improving the health of children with diabetes.
In collaboration with the Snyder-Robinson Foundation and experts in the polyamine field, Dr. Janet Chou, Section Chief and Chair of Clinical Immunology at Boston Children’s Hospital, aims to enable an individual with SRS to have expanded access to eflornithine next summer. We will provide additional information as it becomes available.
Our Foundation
SRF’s mission is to advance medical and scientific research relating to Snyder-Robinson Syndrome and related disorders, in order to find a cure or treatments that will improve the lives of those affected individual. We strive to connect our rare community and provide support to our SRS families.
Learn about Snyder-Robinson Syndrome (SRS)
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What is SRS?
Find out about causes, diagnosis, treatment, & Research literature on SRS.
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Medical Management
Information to help families & doctors understand SRS in it’s entirety.
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Video Library
Access videos created by clinicians, researchers, and SRS families about SRS.
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Family Support
Connect with other SRS families through our online support group.
Take Action
Ready to take the next step? You can become a contributor to our cause, or participate yourself.
