The CACNA1A Foundation, Inc. was founded in January 2020 when three families connected over their shared desire and sense of urgency to fund innovative research to find better treatment options for their affected children.
Board & Leadership Team
Board
Lisa Manaster
President
Lisa Manaster is eager to help build awareness and accelerate the discovery of treatments for CACNA1A. She lives in Connecticut and has three children, a daughter-in-law, and recently was blessed with her first grandchild! After years of genetic testing, her youngest daughter, Emily, finally received a diagnosis of CACNA1A in 2017 at the age of 20. While Lisa does not believe earlier identification would have changed their path, supporting research for a cure has become her passion. Lisa has worked as both an advocate and a special educator. She received interdisciplinary leadership training in the field of developmental disabilities as a Fellow in the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program at the Westchester Institute for Human Development. Lisa has a Bachelor of Arts in History from Cornell University and an MA from Teachers College, Columbia University. She is excited to be a founding partner of the CACNA1A Foundation and improve the lives of those affected by CACNA1A-related disorders. She believes that sharing your story with the world can effect change.
Sunitha Malepati
Vice President & Treasurer
Sunitha lives in Northern Virginia with her husband and two children. After nearly two years of consulting with various specialists and countless tests, in 2020, Sunitha learned that her daughter has a CACNA1A gene variant. The CACNA1A Foundation has been a tremendous source of hope and support for her family as they navigate their rare disease journey. Sunitha is honored to be a member of the CACNA1A Foundation's Board of Directors because she deeply believes in the promise of the Foundation's mission to accelerate the development of treatment options for CACNA1A children and shares the sense of urgency that drives the Foundation's work. Sunitha is also an attorney. She previously worked in the private investments group at an international law firm. She also represented small businesses and nonprofits in the DC metro area and taught at Georgetown Law. She is a Governing Board member of COMBINEDBrain, a nonprofit consortium devoted to speeding the path to clinical treatments for people with rare genetic neurodevelopmental disorders.
Allison Buchner
Board Member
Allison Buchner lives in Los Angeles with her husband and two daughters. In 2019, Allison’s oldest daughter, who was 10 years old at the time, was diagnosed with a CACNA1A gene variant. Allison believes that like her daughter, there are likely many undiagnosed CACNA1A children (and adults) in the world who have for years been given broader, umbrella diagnoses, like cerebral palsy, as they waited for science to discover the true cause of their movement disorders or other challenges. Her hope is that with awareness and research support, those with CACNA1A will have greater access to knowledgeable medical professionals and other service providers, and ultimately, to treatments. Allison is also a full-time attorney who specializes in intellectual property litigation, and she also has a robust pro bono practice, primarily focusing on special education law and legal advocacy for those with disabilities. She also serves on the Board of Directors for the Disabilities Rights Legal Center and WISHForward (which aims to empower all students through inclusive education).
Amy Junge
Secretary
Amy lives in southern California with her husband Mike and their three children. After years of mysterious medical challenges and misdiagnoses, their daughter was diagnosed in 2020 with a CACNA1A variant that also impacts their youngest son. Receiving the diagnosis was both a relief, to finally understand what was causing her medical issues, and scary, to not have a cure. Amy is honored to join the CACNA1A Foundation board and support the amazing work and advocacy the founders have done since starting the Foundation in 2020. She also deeply appreciates the connections to other CACNA1A families through the Foundation.
Amy has a B.A. from Northwestern University and an M.A. from the University of California at Santa Barbara. A former middle school teacher and assistant principal, Amy now works for Education Evolving, an education non-profit as the Director of Teacher-Powered Schools supporting educator teams using collaborative leadership models at their sites.
Hala Mirza
Board Member
Hala Mirza is the Senior Vice President of Corporate Affairs & Patient Advocacy at Ionis Pharmaceuticals. She was previously Principal of Kaza Consulting, LLC, which provided corporate affairs and responsibility counsel to healthcare and nonprofit organizations. Before starting her own consultancy in 2022, Hala served for eight years as Senior Vice President, Corporate Communications and Citizenship at Regeneron, a leading biopharmaceutical company. At Regeneron, Hala led a high-performing team focused on corporate responsibility, environmental, social, governance (ESG) management, internal and external communications, executive visibility, philanthropy, employee volunteerism and patient advocacy. Hala joined Regeneron from Pfizer, where she was VP, Corporate Affairs for research and development. Previously in her career, Hala was at integrated communications firm W20 Group (now Real Chemistry), where she opened the agency’s first New York office in 2004 and played a key role in driving exponential growth over an eight-year tenure. Hala began her career in the nonprofit sector, serving as Public Relations Officer at the American Red Cross Biomedical Services in the late 1990s.
Hala has served on the Boards of NewYorkBIO and the Society for Science. She has been recognized as a Responsible 100 from City & State Magazine. Hala holds a BA in English Literature from George Washington University.
Deborah Ondrasik, MD
Board Member
Dr. Deborah Ondrasik lives in Rhode Island with her husband Nick and 3 beautiful children ages 5, 8, and 10. Her oldest daughter, Gabrielle, was diagnosed with CACNA1A-associated Epileptic Encephalopathy in 2015. At the time, she was told Gabby was the only person in the US with this rare genetic mutation. Gabby has intractable epilepsy, ataxia, autism spectrum disorder, and intellectual disability.
Dr. Ondrasik earned her MD from Drexel University College of Medicine and completed her pediatric residency in Honolulu, Hawaii through the Uniformed Services Health Professions Scholarship Program. She completed 6 years of service for the US Army, including a deployment to Iraq. She is a board-certified Pediatrician, working in a primary care clinic on the South Coast of Massachusetts.
Her passion is to increase awareness among physicians on the advances in genetics and the positive impact a genetic diagnosis can have for a child and their family. Dr. Ondrasik divides her journey into pre-Foundation and post-Foundation chapters. Having found the Foundation 5 years after Gabrielle’s diagnosis, she is overcome by the support, community, purpose, and hope that has come through the CACNA1A Foundation. She is absolutely thrilled to join the Board and to use her voice as a pediatrician and mother to help make a difference for all children living with a rare disease.
Sarah Greathouse
Board Member
Sarah lives in southeastern New Mexico with her husband, Clinton, and their six kids. In 2021, when their youngest daughter, Emarie, was two years old, she suddenly started having very dangerous apnea and loss of function episodes. After searching for answers in Texas, Colorado and Arizona, Emarie was diagnosed with a CACNA1A variant in November 2021. Receiving a diagnosis was what Sarah and Clinton thought they needed to find help for their daughter. Instead, they were told Emarie had a rare genetic disease that there was little information about and that no one was even sure how to help her, which they realized was almost as bad as having no diagnosis at all. It took them several months to get a genetic counselor to break down the genetic test results, and luckily, she told them about the CACNA1A foundation. Sarah says, "It was truly a blessing to know we were not alone anymore. I was able to email the Foundation website and talk to the President right away, which was life-changing for our family. Ever since we found our new 'family,' I have been passionate about connecting with newly diagnosed families in an effort to advocate for them and minimize the isolation of the unknown. There can be a lot of questions and not very many answers that come along with this diagnosis, so if we can just be there to offer support and any resources, it can make such a positive impact in a place that can be very difficult. I am also on a mission to raise awareness and do much-needed fundraising for the CACNA1A Foundation to achieve its ultimate goal of pushing science forward and finding a cure! I am honored to have the opportunity to join the board, and I am so excited for the future success of our CACNA1A champions!"
Sarah graduated in 2017 with her Certified Medical Assistant degree through the American Academy of Medical Associates. She continues to take various continuing education courses each year in hopes of finishing her bachelor of science in nursing.
Leadership Team
Pangkong Fox, PhD
Science Engagement Director
Pangkong lives in Southeastern Wisconsin with her two kids and husband. Her youngest son was diagnosed with a CACNA1A-related disorder in December of 2021. Until then, the doctors and specialists her son had seen for years could not pinpoint an underlying cause for his ataxia and global developmental delays. However, a tentative diagnosis of left-hemiparesis eventually led to genetic screening of the cerebral palsy gene panel and the discovery of his CACNA1A variant. Pangkong set out to learn as much as she could about this rare condition and found the CACNA1A Foundation and its amazing team. She is honored, excited, and motivated to use her experience as a scientist, educator, and parent of a child with a CACNA1A variant, to connect the CACNA1A research world with the CACNA1A patients and families. She is a proponent of "conversational science" and her goal is to provide families with the support and resources to comfortably talk about CACNA1A to anyone who asks and to help bring awareness to this rare disease. She is also ready to help the board and research collaborators continue to drive the translational research needed to find treatments for CACNA1A patients on the pathway to a cure.
Pangkong received her Bachelor's Degree in Biology from the University of Wisconsin-Madison and her PhD in Cell & Molecular Biology from Indiana University. She continued her postdoctoral research at Northwestern University and has taught at Northern Illinois University, Kishwaukee College, and Aurora University. She had the opportunity to be a stay-at-home mom to care for both of her kids for the past few years before joining the Foundation's team.
Lynn Tusa
Development Director
Since entering the non-profit world in 2008, Lynn has dedicated her career to making a difference in the lives of children and families through non-profit work. Her unwavering passion for helping others led her to the CACNA1A Foundation.
Before joining the CACNA1A Foundation, Lynn spent nearly a decade managing development and communications initiatives for the Stamford Public Education Foundation in Stamford, CT. In her leadership role, she fostered strategic partnerships, drove fundraising efforts (including grant writing, direct marketing, annual appeals, and special events), and elevated the non-profit’s visibility within the community through public relations, social media, and email campaigns.
Prior to that, Lynn worked at The Rowan Center (formerly known as The Center for Sexual Assault Crisis Counseling and Education), where she orchestrated multifaceted fundraising and communication strategies in Fairfield County, CT.
Lynn resides in Stamford, CT, with her husband, son (when he is home from Villanova University), and their two Maine Coon cats. She holds a Bachelor of Arts degree in Literature and Rhetoric and a certificate in Human Services & Society from Binghamton University, along with an Executive MBA from the University of New Haven.