Every Gene
Deserves a Voice.
Join us in bringing hope, advancing research, and empowering families affected by SAMD9L — together, we can shine a light on this rare condition.
Current Fundraising Project
Genetic therapy is
no longer a dream
For rare disease communities, breakthroughs don’t come by chance — they’re driven by patients, families, and advocates who refuse to wait.
In 2023, I was selected as one of just eight patients to receive a personalized therapy for my rare SAMD9L mutation—a condition that caused both leukemia and a progressive neurological disease. After years of worsening symptoms, this therapy finally gives me something I’ve been waiting for: hope.
Thanks to Dr. Stanley Crooke and the N-Lorem Foundation, the therapy itself is fully funded—but the clinical costs to receive and monitor it are not.
I’m asking for your support, not just for me, but for the thousands of others affected by SAMD9L. Every donation is tax-deductible and goes directly to making this treatment possible. Please consider donating or sharing—so together, we can turn hope into healing.
The Impact
How Your Donation Helps
Supporting every step of the SAMD9L journey — with care, connection, and hope.
Power Research and Real Cure Development
Directly funds drug screening, gene therapy development, and partnerships with leading labs and institutions.
Empower Patients & Build Community
Building community spaces, educational resources, and helping patients navigate diagnosis, treatment options, and connection.
Expand Our Reach & Keep Us Going
Ensures we can grow, reach more patients, and sustain the mission (website, communications, basic admin).
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Connections & Partnerships
Join Community
Collaboration is at the heart of The SAMD9L Foundation's mission. By partnering with leading research institutions and laboratories, the foundation accelerates the search for effective treatments and enhances patient support. Key partnerships include:
Fuel Research & Hope
Your support fuels the mission of The SAMD9L Foundation, driving research, patient support, and advocacy efforts. Whether through donations or active involvement, every contribution makes a difference.
