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 one of just eight patients chosen to receive a personalized therapy for my rare SAMD9L mutation—a condition that caused leukemia and neurological decline. After years of worsening symptoms, this therapy offers real hope.
While the therapy is funded by Dr. Stanley Crooke and the N-Lorem Foundation, clinical costs remain uncovered.
JinIX, in partnership with the SAMD9L Foundation, is helping transform patient-owned data into powerful tools for care and research.
Your support can make this treatment possible—for me and others. Every tax-deductible donation helps 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
Speak to Patients
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.
