Cure KCNH1 Foundation is a patient advocacy organization dedicated to raising awareness about KCNH1 genetic disorders and improving the lives of children and families by advancing research in the search for better treatment options and a cure.
Cure KCNH1 was formed out of desperation – our children are very sick, and there are currently no treatments available. Families are faced with a ticking clock; every day that goes by without a treatment causes additional damage to our children’s developing brains and bodies. Our goal is to fight for a better future where one misplaced nucleotide doesn’t define their entire lives. Life-altering gene therapies and drug treatments have been approved for other severe genetic disorders, the technology exists, but as far as traditional drug development companies are concerned, KCNH1 is “too rare to care.” That’s why it is up to us to make this happen. Our foundation must raise the necessary funds to develop treatments and cure KCNH1.