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Celebrate Riaan’s 6th Birthday

Join us for The 12 Days of Riaan: a Giving Tuesday birthday countdown celebrating Riaan as he turns 6 on December 12th by advancing treatments for Cockayne syndrome. Each day we’re sharing a milestone, a story, or a moment of hope that your support has made possible. Together, we’re working to raise $60,000 this December to bring a groundbreaking gene therapy to children.

The First Gene Therapy for Cockayne Syndrome Is Almost Here

This year, Riaan Research Initiative reached a historic milestone. Thanks to the generosity of our community and our groundbreaking collaboration with UMass Chan Medical School, we developed the first-ever gene therapy for Cockayne Syndrome (CSA/ERCC8 mutations): a devastating, ultra-rare genetic disease with no approved treatments. And through the partnership of Andelyn Biosciences, that therapy has now been successfully manufactured in AAV9 form, and is undergoing final release testing. This is a breakthrough once thought impossible. Starting on the most generous day of the year - Giving Tuesday - we are raising $60,000 to bring us one step closer to the clinic. Your gift will help fund drug release, shipping, and storage.

Donate online via debit/credit, Paypal, or an ACH transfer. Don't want to donate online? That's ok! 

Checks can be made out to Riaan Research Initiative and mailed to:

Riaan Research Initiative
6123 224th Street
Oakland Gardens, NY 11364

For wire transfers, or to explore other ways to give, please contact us at info@riaanresearch.org. We also welcome matching funds!


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This organization is a 501(c)3 tax-exempt organization, and your donation is tax deductible within the guidelines of U.S. law. Please keep your receipt as your official record. We'll email it to you upon successful completion of your donation.

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