One discovery.
Countless possibilities.
My son Levi was diagnosed with SLC1A4 in April 2025. He is the only known diagnosis in South Africa. As we started to learn about what the diagnosis meant for his future, I fell in to a space of hopelessness. I was fortunate to connect with Dr Wendy Chung in a chance email exchange and I came to learn about her vision of creating treatments for Rare Genetic Conditions and the possibility that no matter how small an affected group of families, by joining together on a unified front, we can achieve a treatment for SLC1A4 and other rare conditions by scaling through unity. This foundation has given my family hope that we can change the outcome of Levi’s life and in doing that, we can change the conversation for parents of Rare Kids from “there is nothing we can do for your child” to “there is a path to treatment.”
Our son was diagnosed with SLC1A4 when he was around 1.5 years old. We had suspected there was something going awry when he wasn’t hitting most of his milestones by ten months old. At 11 months old we had put him in Physical Therapy, Occasional Therapy, Speech Therapy amongst other therapies. It took extreme effort to keep pushing the doctors to diagnose James’ condition. When we got his diagnosis, we were told to just keep doing what we are doing, and there isn’t very much information out there so “ let it be”. We left that visit very hopeless and beaten down, and our hopes and dreams for our family crushed. Seeing this we are not the type of people to sit still and “let it be”. We did our own research and digging, and we were able to connect with Doctors that specialize in working with children with Rare Genetics. This has finally given us some hope that one day that there might be a gene therapy developed to help not only SLC1A4, but to help thousands of other Rare Genetics.
From infancy, it was clear something wasn’t right with Luccia. Subtle signs were often dismissed, but after months of pushing, she was diagnosed with the rare condition SLC1A4. What followed were years of uncertainty, with little research, few answers, and a sense that the condition was too rare to receive attention. Today, the rise of the Rare Alliance Foundation and renewed interest in SLC1A4 research feels extraordinary. For the first time, there is real momentum—bringing hope not only for Luccia, but for many families who have long felt overlooked.
This journey has shown that rare disease research is never insignificant. Breakthroughs often begin with just a few patients and go on to impact millions. That belief now gives this community purpose and hope that rare disease research can lead to meaningful solutions and shape the future of medicine.
This is a transformative moment in history—scientific and medical advances are poised to change the future of children’s health.
Rare Alliance Foundation plays a critical role by mobilizing philanthropic support to pursue treatment strategies for rare genetic conditions, especially where commercial funding is not available.
The goal is that no child is left behind.
The Cost of Isolation
One investment. Multiple breakthroughs.
One investment. Multiple breakthroughs.
A Shared Platform
for Parallel Progress
Rare Alliance unites world-class scientists and global philanthropy to build a shared platform that supports many treatments in parallel.
Instead of reinventing the wheel for each disorder, we fund scientific teams, reusable models, data, vectors, and trial frameworks that benefit multiple diseases simultaneously.
Why Our Model Works
Shared vectors and disease models
Shared genomic and clinical data
Shared trial playbooks
Stronger probability of success across the entire pipeline
Faster timelines and lower costs
Why Now? The Urgency of Coordination
Gene therapy and genomic tools are ready for deployment. The missing piece is a coordinated platform to deploy them efficiently across diseases. Rare Alliance fills that gap.
Become a Founding Partner.
Your contribution builds the infrastructure that accelerates cures for years to come. Invest in a system that transforms isolated efforts into accelerated, system-wide outcomes.
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