top of page

Henry is battling a one in a million, severe neurological disorder called AHC. A treatment is in reach and we need your help today.

Homepage Fam Pic Henry in Air_edited.jpg

This is our reality as we rush to design a treatment for Henry that could be available in a year before the ramifications of this disease have lifelong implications.


We need your help in spreading awareness about Henry’s story

and our disease and in raising funds for a treatment  that

could not only help Henry and  others with AHC, but

countless other children  with rare, genetic,

neurological diseases.

What would you do if you learned months later that the science to treat this disease is available, you just have to raise funds to make it happen?

What would you do if you were told when your baby was 9 weeks old that he had a rare, genetic, incurable disease and might never walk or talk? 


For Henry AHC's mission is to fund research to develop a treatment for Henry and others with AHC. Our current focus is funding research to design an antisense oligonucleotide (ASO) treatment for Henry and to forge a path for ASOs to be developed for all others with AHC and other similar rare genetic neurological diseases.


We are working with top scientists and doctors who are experts in both ASO treatment design and AHC to develop an ASO for Henry and we are collaborating with three of our AHC community’s foundations: CureAHC, AHCF, and Hope for Annabel to forge paths to treat all others impacted by our disease.

All funds raised by For Henry AHC will be used for charitable purposes to fund research for the development of a treatment for Henry and for others with AHC. No donations will be used for Henry’s care.

bottom of page