NEWS & PRESS
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The CACNA1A Foundation Announces the Appointment of its First Executive Director
We are proud to announce the appointment of Shira Johnson as our first Executive Director! With more than 20 years of nonprofit leadership experience, Shira will help guide the Foundation into our next chapter, accelerating research, strengthening family support, and driving progress toward treatments and a cure for CACNA1A-related disorders.
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UTHealth Houston Opens First-Ever CACNA1A Multi-Disciplinary Clinic, providing hope for patients
On March 17, 2025, the CACNA1A Foundation participated in the ribbon-cutting ceremony for the opening of the CACNA1A Multi-Disciplinary Clinic at UTHealth Houston. This new clinic—the first of its kind in the world—is led by faculty members from McGovern Medical School at UTHealth Houston.
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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.
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Determination and Persistence Allow Family to Overcome Challenges of Rare Genetic Condition
Four-year-old CACNA1A Champion Finnegan Alford has faced life-threatening seizures and long hospital stays since his diagnosis at 10 months, yet with his family’s support and innovative therapies, he continues to make inspiring progress—showing the power of resilience and the urgent need for awareness and research.
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Dr. Barañano Shares Updates on Research and Clinical Care
Dr. Kristin Barañano, a pediatric neurologist and neurogeneticist at Johns Hopkins University and the Kennedy Krieger Institute talks about the latest developments in CACNA1A research and clinical care in Episode 23 of Rare Awareness Radio.
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Tune in for an Inspiring Conversation about Science, Persistence, and Hope for the Rare Disease Community with Sam Young, PhD.
Dr. Sam Young, Director of the Gene Therapy Center at the University of North Carolina at Chapel Hill, talks about gene therapy and the urgent challenges in treating rare neurological conditions like CACNA1A-related disorders in episode 24 of Rare Awareness Radio.
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Pioneering Genetic Therapies for Rare Disorders with Dr. Fikri Birey on Rare Awareness Radio
Dr. Fikri Birey, neuroscientist and Assistant Professor at Emory University, whose lab uses patient-derived 3D brain organoids to study rare neurological disorders like CACNA1A channelopathies. He shares insights on emerging therapies such as CRISPR and ASOs, and the vital role of advocacy and collaboration in driving research forward.
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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.
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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.
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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.
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CACNA1A Foundation to Contribute Data to C-Path’s RDCA-DAP, Accelerating Neurological Disease Research and Therapeutic Development
The CACNA1A Foundation is contributing its natural history study data to the Critical Path Institute’s Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP), a global hub advancing rare disease research and treatment. This collaboration will help drive progress toward developing new therapies for affected families.
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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.
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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.
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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 Einstein/Montefiore Hospital (New York).
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How Rare Disease United These Mothers in the Fight for a Cure
CACNA1A moms tell their story of how they refused to accept vague diagnoses for their young daughters and turned their fear into purpose by founding the CACNA1A Foundation to raise awareness, and accelerate research toward treatments .
Neurological Disorders Insert (September 2020) in USA Today
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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.
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Children’s Disease Leads to New Foundation
Shanna Tolbert explains what motivated her to co-found the CACNA1A Foundation.
