Our children find it challenging to walk and talk. They deal with serious medical issues, such as life-threatening seizures and migraines that cause muscle weakness and paralysis. Many variants cause neurodegeneration, meaning brain cells are dying. The clock is ticking. There are no clinical trials. There is no treatment. There is no cure. YET.
We are passionate parents on a mission to aggressively fund life-changing research. We plan to bring our families, doctors, and the world’s best scientists together in a collaborative effort. We are committed to accelerating the research process to find targeted treatment options and a cure for today’s generation of CACNA1A patients.
Be a part of the mission
Join us for an educational webinar→
Participate in the Natural History Study→
We are committed to…
🧬 Increasing awareness of CACNA1A variants
🧬 Supporting individuals and families affected by CACNA1A
🧬 Raising funds to advance research and treatment options to find a cure for CACNA1A
What is it?
CACNA1A is a very large gene on the 19th chromosome. Variations in this gene can cause neurodegenerative disease and a variety of neurological symptoms including…
Ataxia
Migraines & Hemiplegic Migraines
Epilepsy
Developmental Delays
Hypotonia
Eye Movement Disorders
Cerebellar Atrophy
Intellectual Disability
Meet Affected Patients
CACNA1A related symptoms can have devastating effects on patients and their families. Many symptoms begin in childhood and worsen over time.
Hope in Research
We have the opportunity to change the outcomes of these brave warriors by funding cutting edge research that provides better treatment options. Research is expensive and we are dedicated to finding a cure.
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