News & Press
The CACNA1A Foundation Appoints its First Development Director
The CACNA1A Foundation announced the appointment of Lynn Tusa as its first Director of Development. Lynn brings a wealth of experience and unwavering passion to the foundation’s mission of accelerating the development of treatment options and a cure for this rare neurological disease.
How One Foundation Is Laying the Groundwork to Advance Treatments for an Ultra-Rare Disease
Sunitha Malepati, Vice President of the CACNA1A Foundation and Deborah Ondrasik, Pediatrician, volunteer and parent to a CACNA1A Champion, discuss their journey and why research is so important.
The Importance of Whole Genome Sequencing for Diagnosing and Treating Children with Neurodevelopmental Disorders
Dr. Deb Ondrasik, pediatrician and mom to a CACNA1A champion, talks about how vital genetic testing is for those with CACNA1A variants and how it can help guide treatment.
Geneticist and CACNA1A Mom share experiences with rare genetic diseases, rare disease trends to be watched, and more.
Listen to Dr. Deborah Ondrasik, General Pediatrician and mom to a CACNA1A Champion and Dr. Wendy Chung, Director of Clinical Genetics at Columbia University, give their expertise with early intervention, treatment and a way forward for translational research.
CACNA1A Foundation to Contribute Data to C-Path’s RDCA-DAP, Accelerating Neurological Disease Research and Therapeutic Development
Pediatricians are at the front line when it comes to advocating for patients with developmental delays.
Deb and Nick Ondrasik, pediatricians and parents of a CACNA1A champion, raise awareness about the need for early genetic testing in this article by STAT News, a media company focused on reporting compelling stories about health, medicine and scientific discovery.
The CACNA1A Foundation Receives Chan Zuckerberg Initiative Rare As One Grant
The grant will support the development of a diverse and inclusive network that brings together CACNA1A patients and researchers to accelerate diagnosis, treatments and cures.
The Challenge of Rare Disease as Told Through the Voices of Three Moms
In recognition of Rare Disease Day 2023, CACNA1A Foundation President and Co-Founder Lisa Manaster, is interviewed about her journey in the Winter newsletter of Eintein/Montefiore Hospital (New York).
How Rare Disease United These Mothers in the Fight for a Cure
Neurological Disorders Insert (September 2020) in USA Today, September 20, 2020
Girl in viral photo learns that her rare condition may be treatable
Photo of former CACNA1A Foundation Board Member Carolyn Anderson’s daughter, Maren, outside ULTA, goes viral.
Children’s Disease Leads to New Foundation
Shanna Tolbert explains what motivated her to co-found the CACNA1A Foundation.