There are 6,000+ rare diseases. AHC was first noted in the 1970s; described as an unusual disorder in eight children who demonstrated intermittent episodes of weakness, affecting first one side of the body, then the other, with onset… Read More

The Race to End AHC looks different this year, and so does our gear! Visit the store to check out this year’s new t-shirt look and stock up on some classics like bandanas, car magnets, and the fan… Read More

The last two years we’ve had incredible race day parties all over the world. We still want to celebrate again together this year, just at the finish line instead! Gather your family and friends to celebrate your accomplishment… Read More

The AHC community has a remarkable network of strong families and friends that work hard to raise money every year for research and family support. The best way to support these AHC families is by encouraging family and… Read More

Registration is now open for our 3rd Annual Race to End AHC and it’s going to be our most exciting year yet! This year we’re connecting racers better than ever by using a digital race platform, My Virtual… Read More

2021 saw advances in a number of projects sponsored by the AHC organizations.  Here is an update of where we are today in each of them: 1. The AAV Project: AAV-Mediated Gene Therapy   We are continuing to assess… Read More

The AHC Foundation with Hope for Annabel and CureAHC are collaborating with RARE-X to build a data collection program for AHC families. Click here to learn more about this patient owned data hub that can connect all the… Read More

Rarity in our world is often a very good thing. All of the most valuable things in our world are so because they are rare. The less of most any one thing, the more desired it is, and… Read More

The AHC Foundation is delighted to announce a partnership with Dr. David Liu’s laboratory at the Broad Institute and Harvard University to investigate gene editing as a potential therapy for AHC. The work of Dr. Liu and his… Read More

The second collaborative webinar is set for January 16th 1pm eastern! “Medication: Do No Harm” will be a panel style discussion of medications applied to AHC. The moderated format of the presentation will present questions submitted by the… Read More