From Patient to Pioneer: jinIX Supports Nathan Ehrlich’s Mission for Rare Disease Research

SAN FRANCISCO, May 8, 2025 /PRNewswire/ — The jinIX Foundation hosted a meaningful and inspiring gathering—not just to mark the launch of its non-profit initiative, but to honor Nathan Ehrlich, a young rare disease advocate whose courage and vision are helping to reshape the future of patient-led clinical research.

jinIX Foundation, a nonprofit foundation, in collaboration with jinIX Cosmos Inc., develops digital health platform designed to improve the lives of rare disease patients. It offers an AI-powered symptom checker to help patients recognize early signs of rare diseases, and uses blockchain to keep medical data secure, private, and under the patient’s control. jinIX also builds tools to help patients share their data for research and connect with the right doctors and studies. Its mission is to make diagnosis faster, data more trustworthy, and clinical research more accessible to those who have been overlooked by traditional healthcare systems.

Diagnosed with leukemia at 16 and later found to carry a rare SAMD9L gene mutation, Nathan now lives with symptoms similar to Amyotrophic Lateral Sclerosis. For years, he faced uncertainty, fragmented care, and little hope for progress. But rather than give up, Nathan chose to fight—not only to uncover the root cause of his illness, but also to pursue a cure. He is not fighting just for himself, but for an entire community of patients like him.

To support this mission, Nathan founded the SAMD9L Foundation, a nonprofit dedicated to raising awareness, accelerating research, and building community for individuals and families affected by SAMD9L-related conditions.

At the event, Nathan shared his story publicly outlined his mission to launch a patient-led clinical trial, raise awareness for SAMD9L-related conditions, and build a global data and support network for others facing similar challenges.

“It takes a decade for an average rare disease patient to get a diagnosis. Most of us feel invisible,” Nathan said. “But with jinIX, something changed. They listened. They helped me turn my story into a study. Together, we’re not just searching for a cure—we’re building a movement.”

jinIX is working with the SAMD9L Foundation, which Nathan founded, to support a groundbreaking natural history study guided by Dr. David Putrino at Mount Sinai, NY. The project will collect electronic health journey data from patients with SAMD9L mutations and related conditions to better understand disease progression and treatment needs. jinIX’s role is to provide secure infrastructure, data management, and patient coordination for this work.

“This study is a new model for what patient-led, data-powered research can look like,” said Jeffrey Zhang, CEO of jinIX

Also in attendance was Patty DeDominic, a board member of the jinIX Foundation, founder of DeDominic & Associates, and a longtime advocate for women- and patient-led innovation:

“Nathan isn’t just a patient—he’s a pioneer,” Patty said. “jinIX exists to support visionaries like him, giving them the tools, technology, and partnerships to lead the way forward.”

The event closed with a performance of an original song, “The World Is Beautiful Because of Me,” composed to honor Nathan and the rare disease community. The gathering marked not just a launch, but a movement—one built on collaboration, compassion, and the belief that patient voices can guide meaningful change.

As jinIX continues to grow, it is expanding collaborations with researchers, physicians, and patient advocacy groups around the world. But its foundation will always be rooted in stories like Nathan’s—proof that real change begins when patients are trusted and empowered to lead.

To learn more about Nathan’s journey and support us, please visit https://www.samd9lfoundation.org/ or contact jinIX (www.jinix.io) via contact@jinix.io.

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SOURCE jinIX