Rare disease is not defined by numbers alone. It is a shared system shaped by delayed diagnosis, limited data, and under-built infrastructure — challenges experienced every day by families affected by H-ABC Leukodystrophy. Recognizing this reality changes how progress is made.

The Bridge: For a long time, the story of rare disease was told through the lens of 'scarcity'—too few patients, too much risk, and not enough funding. But we are witnessing a historic pivot. We are moving from an era of managing symptoms to an era of 'curing the incurable.’

After five wonderful years of dedicated service, we share the bittersweet news that Robert “Bob” Ziarko will be retiring from the Foundation’s Board, effective December 2025.

(Image courtesy of Village-News)

Each year, Giving Tuesday offers a global pause—an opportunity to come together, to give, and to make an impact. For rare disease foundations like ours, this day does more than raise funds—it raises visibility, strengthens community, and accelerates progress.

As we approach the end of October, we’re taking a moment to reflect on the incredible momentum our community has built this fall. From fundraising success to scientific progress to new leadership in our advisory team, this season has reminded us of the power of hope, collaboration, and determination. Every step forward is a step we take together- and this fall, we took some big ones.

The Foundation to Fight H-ABC is thrilled to announce the addition of Dr. Eric Mallack and Dr. Josh Bonkowsky to our Advisory Board. These two world-renowned experts bring critical expertise in clinical care, neurogenetics, and leukodystrophy research, strengthening our mission to advance understanding and treatment of H-ABC.

Synaptix Bio urgently needs your support to renew the Priority Review Voucher (PRV) program, a vital tool that provides financial incentives to accelerate clinical trials and speed up the FDA review process here in the U.S.

The PRV program was expected to be extended by Congress last December but remains unapproved due to other legislative priorities. Your voice can help change that.

https://everylifefoundation.org/rare-advocates/take-action/

It's hard to believe we are now in our tenth year of advocating for those living with H-ABC/TUBB4A! We have made meaningful headway but the process is slow and complicated. Nevertheless, we continue to drive forward. Here is what we have been doing.

Link to Ten Year Anniversary