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Our Mission

Our mission is to urgently improve the lives of individuals and families affected by KCNH1-Related Disorders by accelerating research toward the development of effective treatments and a cure, building connections within the KCNH1 patient and professional community, raising awareness about KCNH1-related disorders, and advocating for the needs of families affected by rare diseases.

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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.

Contact Us

We're always looking for support for our mission. 

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