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The CACNA1A Foundation Receives Chan Zuckerberg Initiative Rare As One Grant

November 3, 2021 GMT
CACNA1A Foundation & Chan Zuckerberg Rare As One Logos
CACNA1A Foundation & Chan Zuckerberg Rare As One Logos
CACNA1A Foundation & Chan Zuckerberg Rare As One Logos

NORWALK, Conn., Nov. 3, 2021 /PRNewswire/ -- The Chan Zuckerberg Initiative (CZI) announced today that the CACNA1A Foundation is among a select group of rare disease organizations to receive a Cycle 2 Rare As One (RAO) grant. CACNA1A gene mutations cause various neurodevelopmental disorders, epilepsy, movement and coordination issues, and hemiplegic migraines, a stroke-like condition that can result in skill regression, coma, and brain swelling.

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The CACNA1A Foundation was founded in 2020 to improve the understanding, diagnosis and treatment of CACNA1A disorders. CACNA1A is a calcium ion channel gene that is highly expressed in the central nervous system and the cerebellum. There are no therapeutics for individuals with CACNA1A variants. Becoming a member of the RAO network allows the CACNA1A Foundation to build its capacity to accelerate research towards a cure.

“The Foundation has achieved much in a short time because it operates with a mother’s urgency,” said Lisa Manaster, Co-Founder & President of the CACNA1A Foundation. “But we have a lot left to do. This transformative grant will power our efforts to build a patient-led global CACNA1A research network necessary to achieve our vision of a world free of the debilitating effects of CACNA1A-related disorders.”

“From the moment of liftoff just one year ago, the CACNA1A Foundation has accelerated collaboration among our expert community and recruited stakeholders to share clinical knowledge and science openly,” said Cullen Trust Chair in Neurogenetics at Baylor College of Medicine and CACNA1A Foundation Scientific Advisory Board Member, Jeffrey Noebels, MD, Ph.D. “The CZI award recognizes that in a very short time, this foundation has become a significant force, driving the search for cures for CACNA1A-related diseases. Its commitment has been transformative for the CACNA1A community.”

About the CACNA1A Foundation:

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The CACNA1A Foundation was founded in 2020 and is led by a group of mothers whose children have CACNA1A variants. CACNA1A is a calcium ion channel gene that is widely expressed in the central nervous system and cerebellum. CACNA1A mutations cause neurodevelopmental disorders, epilepsy, movement/coordination issues, and hemiplegic migraines, a stroke-like condition that can result in skill regression, coma, and brain swelling. They can also be neurodegenerative. The CACNA1A Foundation’s mission is to find specific treatment options and a cure for CACNA1A patients. For more information, please visit www.cacna1a.org.

About the Chan Zuckerberg Initiative:

The Chan Zuckerberg Initiative was founded in 2015 to help solve some of society’s toughest challenges — from eradicating disease and improving education to addressing the needs of our local communities. Their mission is to build a more inclusive, just, and healthy future for everyone. For more information, please visit www.chanzuckerberg.com.

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SOURCE CACNA1A Foundation