With a patient population as small as ours, every minute volunteered and every penny donated makes a difference. Your action has the power to transform a life, a family, an entire community.
Ways of Giving
1. Via payment portal
Just fill out the following form to securely donate.
2. Via PayPal
If you had trouble with the above payment portal, you can donate via PayPal (including those donating from outside the United States):
3. Via Check
If you would like to donate via check, please make it out to:
The Snyder-Robinson Foundation c/o Michael Raymond
1443 Layman Street McLean, VA 22101 USA
For questions or special requests, you may contact Michael at firstname.lastname@example.org.
4. Amazon Smile
Every time you shop using Amazon.com, you can donate to SRF at no additional cost by selecting the Snyder Robinson Foundation as your charity on AmazonSmile. Once you select 0ur charity to support, Amazon automatically donates 0.5% of your purchase to our organization. This way, you can donate for “free”!
Current Research Funding Priorities
The Spermine Prodrug Project is led by Dr. Otto Phanstiel and his colleagues at the University of Central Florida. Snyder-Robinson Syndrome (SRS) is caused by a mutation of the SMS gene. This gene makes an enzyme called spermine synthase, which helps the cells to produce a necessary chemical called spermine. This enzyme doesn’t function properly in the cells of individuals with SRS. Researchers believe that the problems caused by SRS may be mitigated by introducing spermine into the cells. Dr. Phanstiel’s Prodrug Project is an effort to develop a compound that will introduce spermine into the cells in a safe, effective, and non-toxic manner. For more information about this project, please visit our SRS Virtual Conference at https://www.snyder-robinson.org/conference2020/ and view Dr. Phanstiel’s presentation. Registration is required to view the video, but there is no cost to register. Snyder-Robinson Foundation needs to raise about $35,000 to complete the Spermine Prodrug and test it in our SRS mouse models. Our goal is to raise these funds and start this project by the end of this year!
The Whole Genome Sequencing Project was proposed by Dr. Cornelius Boerkoel from the Department of Medical Genetics at the University of Vancouver. SRS has a very wide range of presentation in affected individuals. Some individuals are high-functioning and others have a more severe presentation. Sequencing the entire genome maps the person’s DNA. The sequencing tests of individuals in our Natural History Study (and their parents) should help us understand why the varies so greatly. Hopefully, it will also help inform us which individuals with SRS are likely to benefit from various treatments. Finally, we expect that this project will give us a better overall understanding of SRS and its disease mechanisms, which in turn will help us to develop safe and effective treatments. The cost of whole genome sequencing is about $2,000 per individual.