What is Our Team About?
KCNA2 Epilepsy, Inc. Board of Directors is comprised of individuals dedicated to increasing the quality of life for individuals with a KCNA2 diagnosis. Individuals who serve on the board agree to work together to actively engage in raising KCNA2 awareness to the general public, collaborating with neurologists, researchers and health care providers, and connecting with academic institutions and other parent advocacy organizations related to rare epilepsies such as KCNA2. Those who serve on the board do so on a voluntary basis, without compensation, to support families and educate the community worldwide about KCNA2. If you are interested in serving on our board, please click here to inquire.
Nancy Musarra Ph.D.
Nancy Musarra Ph.D. is a licensed clinical psychologist in Ohio, USA. She provides psychological and competency assessments to municipal courts and maintains a private practice.
She specializes in First Responder Trainings for police, fire, and EMS to help public safety professionals better understand how to deal with individuals diagnosed with Autism and Neuro-Developmental Challenges. After her daughter was born and diagnosed with KCNA2, Nancy initiated an international parent support group for KCNA2 families.
She developed the website ‘KCNA2 Epilepsy Global Connection’ to support families around the world, and help them network with each other and gain information about effective treatment, therapy, education, and research options. Together, Nancy and her daughter Giana authored “The New Normal; 7 Things to Know as You Care for and Love a Child with Special Needs.”
CO-FOUNDER, Vice President/Secretary
Renee Swannack is a passionate advocate within the KCNA2 community.
After her son Damian’s diagnosis in 2018, Renee established the KCNA2 Epilepsy Alliance – a social media based platform raising awareness of KCNA2 Epileptic Encephalopathy and providing a link between newly diagnosed families and the parent group established by Dr. Nancy Musarra.
Through public speaking, contributing to parent advocacy groups and writing for a variety of publications, Renee endeavours to build a community, exchange information, increase research, raise awareness, and improve outcomes and quality of life for our children.
McKayla Leber is the wife of a military officer from the United States. She is a full time stay-at-home mother of three young children. Her first born was diagnosed with KCNA2 in 2016. McKayla is a passionate advocate of well-balanced solutions that combine therapeutic, medical, educational, and spiritual support.
McKayla has a Bachelor of Science in Human Services, with an emphasis in Bible and Missions. She earned a Master of Arts in Theological Studies. As a non-denominational Christian, McKayla is dedicated to helping families who seek spiritual support through Scripture and connection to community.
Alysha Applebaum received her bachelor’s degree in sociology at UCLA and went on to become a paralegal. She worked in worker’s compensation defense for several years before becoming a full time mother in 2017. She currently takes care of her two daughters, ages 3 and 1 years old. Her 3 year old, Ilana, has gain function KCNA2 and Alysha is a strong advocate on her behalf.
Oriana Horneck is an elementary school teacher with a bachelor’s degree in psychology and a master’s degree in elementary education. She and her husband, Brian, lived and taught internationally for eight years in Mexico, Brazil, and Bulgaria. Their son, Avery, was born and lived abroad with them, but when his needs became more significant due to his KCNA2 epilepsy, they returned to the USA where they currently reside in Portland, Oregon. Oriana and her family love the outdoors and are passionate about involving Avery in those pursuits. You can find them running with Avery in his jogger, biking with his trailer, and hiking with him in a pack.