In Memory of Eve H. Schaare
As the mother of seven children and grandmother of 17 grandchildren, it broke Eve’s heart to see her youngest grandchild, Jon, struggling to do everything her children and grandchildren did without effort. She couldn’t understand why she could not “fix” him. She also couldn’t understand why the doctors did not have the answers. The mission of the CACNA1A Foundation is to find a cure for these children, which is something that Jon’s Grammy, Eve, would have loved to have seen.
About CACNA1A: CACNA1A is a calcium channel gene that plays a vital role in the communication between neurons in the brain. A change in the gene alters the function of the channel and affects the release of neurotransmitters. As a result, patients present with neurodevelopmental differences including intellectual disability, autism, seizures, balance and coordination issues (ataxia), hemiplegic migraines (stroke-like episodes which cause loss of skills on one side of the body), eye-movement disorders, speech and language issues, problems with sleep and many other neurological issues. A CACNA1A mutation significantly impacts the lives of the people who live with this disorder and their families. Current options for treating CACNA1A-related disorders are limited to managing and/or treating symptoms. There is no known cure for CACNA1A, but a genetic diagnosis provides the first steps for people to find an answer for their symptoms and connect with others affected by CACNA1A. Jon was finally diagnosed with CACNA1A when he was 7.5 years old. We are so grateful for the CACNA1A Foundation which is working to fund research for new therapeutics and a cure for this disease.
The CACNA1A Foundation: The mission of the CACNA1A Foundation is to find specific treatment options and a cure for CACNA1A patients by building a collaborative network of patients, families, clinicians and scientists that will work together to raise awareness and accelerate the understanding, diagnosis and treatment of CACNA1A-linked diseases. The Foundation supports families, provides educational resources on CACNA1A-related diseases, raises awareness and most importantly, funds research toward a cure. As a parent-led organization, they are working with a sense of urgency to develop resources, including patient neuronal cell lines (iPSC lines) and animal models needed for drug development, and collaborating with scientists on gene therapies. To learn more, please visit their website: https://www.cacna1a.org/
As a designated 501(c)(3) nonprofit organization, donations to the CACNA1A Foundation are tax-deductible to the fullest extent allowed by law. EIN 84-4985747
You may also mail a tax-deductible donation to:
CACNA1A Foundation
31 Point Road
Norwalk, CT 06854
If you have any questions about your gift, please call Lisa at the CACNA1A Foundation at 203-969-6552 or email her at Lisa@cacna1a.org.
WE ARE SO GRATEFUL FOR YOUR SUPPORT OF THIS ORGANIZATION WHICH MEANS SO MUCH TO OUR FAMILY