A Mother’s Promise, A Community’s Mission

We pause to share a heartfelt message from End AxD board member Deborah Hughes. In honoring her son Daniel, Deb reminds us what this work is truly about - love, persistence, and a community determined to change the future of Alexander Disease.

From the moment of her son Daniel’s diagnosis, Deb was told he would not be eligible for the clinical trial because of his VP shunt. It was crushing news—but it never shook her resolve. She made a promise to Daniel that his journey would not be in vain and that his story would carry forward a greater purpose.

Like so many parents facing this disease, Deb grieved. She questioned. She struggled. But she also chose to turn that pain into purpose. She committed to raising awareness, advancing research, and standing shoulder to shoulder with other families walking this path.

That promise to Daniel became action. Out of her heartbreak grew a 501(c)(3) foundation dedicated to funding research and supporting families. Through relentless fundraising, advocacy, and amplifying the voices of those impacted, Deb honors Daniel every single day.

Her conviction is unwavering: there will be a day when effective treatments exist, when no parent has to carry the unbearable weight of losing a child to this disease. Deb knows the path is steep, but she also knows it is possible through persistence, collaboration, and community support.

Her words remind us: “This work requires a village, and I am committed to fighting for these families until my last breath. Together, we can transform grief into progress and hope into reality.”

Daniel’s light shines in every step of this mission. And because of Deb’s commitment and the collective commitment of this community, we move closer to the future our children deserve.