KCNA2 Epilepsy

Global Support Community

KCNA2 Epilepsy Global Connection: Our Founding

In March, 2017, a parent support group via Facebook was initiated to connect parents and families from around the world who are affected by KCNA2 epileptic encephalopathy. Within two years, over 55 families joined, sharing their challenges and successes as caregivers for a loved one diagnosed with KCNA2. Collectively, we identified a significant need for more advocacy, research opportunities, and effective treatment interventions.   

Nancy Musarra and Renee Swannack created the KCNA2 Epilepsy Inc. in 2020 to provide the networking families around the world affected by KCNA2 means to address the needs of individuals diagnosed with this rare epilepsy.

KCNA2 Epilepsy Global Connection is working to become a 501(c)3 non-profit organization so that we can receive donations that are tax-deductible to the extent the law allows.

KCNA2 Epilepsy

ABOUT THE ORGANIZATION

Our Story

KCNA2 Epilepsy Global Connection provides information and support for those who are diagnosed with KCNA2 epileptic encephalopathy. The goal of our site is to network with and learn from medical and scientific experts, neurologists, therapists, educators, and biopharmaceutical companies to advance research and treatment that will improve the quality of life and the treatments available for KCNA2 patients.    

Our Mission

The mission of KCNA2, a rare form of epilepsy, is to promote education and awareness so patient-focused research and effective treatments become available. By connecting families affected by KCNA2 with professionals, we can provide support and improve outcomes around the world.

WHAT IS
KCNA2 EPILEPSY

SEIZURES &
TREATMENT

PARENT
SUPPORT GROUPS

OUR
STORIES

Science Driven

CLINICAL TRIALS

As of 2020, there is no cure and no FDA approved treatment for KCNA2. Current literature available about KCNA2 is often qualitative, and focused on identifying characteristics of those individuals diagnosed with KCNA2. The KCNA2 Epilepsy – Parent Group and the KCNA2 Epilepsy Global Connection website serve as the foundation for parents and professionals from around the world to come together and promote awareness, education, research, and effective therapies for KCNA2 families.  Ultimately, we will find a cure.

Clinical Trials for Epilepsy
KCNA2 Success Stories

Show Your Support

GET INVOLVED

If you have been diagnosed with KCNA2 or are a caregiver to someone who is, you can ask to join a private Facebook page called KCNA2 Epilepsy – Parent Group. Over 50 families from around the world have joined since the group was introduced in 2015. On the site, you can read about other families.  They are listed under, “Stories, Around the Globe”- Our KCNA2 Family”.  Some families may provide additional contact information such as emails or websites. As our website evolves, we will feature video meetings on specific KCNA2 topics and there you can connect with KCNA2 families from around the world.  Eventually we plan to host a summit so that KCNA2 parents and professionals can meet in person.

Show Your Support

GET INVOLVED

If you have been diagnosed with KCNA2 or are a caregiver to someone who is, you can ask to join a private Facebook page called KCNA2 Epilepsy – Parent Group. Over 50 families from around the world have joined since the group was introduced in 2015. On the site, you can read about other families.  They are listed under, “Stories, Around the Globe”- Our KCNA2 Family”.  Some families may provide additional contact information such as emails or websites. As our website evolves, we will feature video meetings on specific KCNA2 topics and there you can connect with KCNA2 families from around the world.  Eventually we plan to host a summit so that KCNA2 parents and professionals can meet in person.

Epilepsy Treatment

OUR PARTNERS

RARE Foundation Alliance
Rare Epilepsy Network
Epilepsy Leadership Council
Epilepsy Genetics Initiative
GETA