Foundation to Fight H-abc

The Foundation to Fight H-ABC was established in 2015 to support children affected by H-ABC, a rare and progressive neurological condition. Its mission is to raise awareness and fund research—efforts that are actively underway today in pursuit of a treatment and, ultimately, a cure. Rare diseases, while individually uncommon, collectively represent a significant public health challenge. There are more than 10,000 known rare diseases impacting over 30 million people in the United States—approximately one in ten individuals. A disease is classified as “rare” when it affects fewer than 200,000 people in the U.S. Yet despite advances in medicine, 95% of rare diseases still have no FDA-approved treatment. This gap is largely driven by limited awareness, reduced financial incentive, and the challenges of funding research for conditions that affect relatively small populations. In the case of H-ABC, approximately 300 patients have now been identified worldwide—a number that continues to grow materially as diagnosis improves. Facing this reality became deeply personal when our only child was diagnosed with a rare disease. In response, we made a commitment to drive change—to raise awareness, challenge the lack of attention given to rare conditions, and advocate for progress where it is urgently needed. Because rarity should never determine importance. This belief is not unique to our Foundation. It reflects a broader movement shared by thousands of nonprofit organizations across the rare disease community—each working to ensure that no condition, and no family, is overlooked simply because the numbers are small.  Collectively we amount to many!

In addition to our national outreach efforts, the Foundation to Fight H-ABC is deeply engaged within local communities—organizing events such as car washes, school partnerships, and annual gatherings to raise awareness of this rare and frequently overlooked condition. We invite individuals to support our mission both directly and indirectly. Volunteers may assist with event execution, contribute to awareness campaigns, or help develop creative materials that amplify our message.

We recognize that traditional approaches to awareness are no longer enough. To truly expand our reach, we are intentionally engaging the next generation—empowering young people to bring fresh perspectives, new platforms, and innovative ways of communicating. Their input is critical in reshaping how rare diseases are understood, discussed, and shared. By fostering empathy and awareness, we aim to spark deeper involvement—not only in our cause, but across the broader rare disease community. We hope to inspire future pathways in caregiving, genetics, therapeutic development, medical technology, and beyond. There is no single way to make an impact—but there are countless opportunities to do so where it matters most. We believe the future of this mission will be shaped by those willing to see it differently—and act on it.