Epilepsy Support Group
A Potassium Channel Epilepsy Support Group (on Facebook) was created on December 5, 2022 as a way to reach out and support families caring for a loved one with a Potassium Channel variation.
The group was originally called KCNA when it was created in 2021. It was formed to connect families with a variety of KCNA mutations (KCNA1, KCNA2 or KCNA3). We changed the name of this group when we became aware of the many gene variations affecting the Potassium Channel causing similar disorders to KCNA2. Our group is now more inclusive because everyone challenged by a Potassium Channel Developmental variation are connected.
By connecting all families with potassium channel variations, we can support each other and share resources. It is our hope that as new medications and therapies are discovered we can advocate together, be included in trials and considered for possibly life-changing treatments. While each one of our gene mutations are incredibly rare, we are a large group as we band together and our numbers grow, especially as increased genetic testing becomes better able to detect gene variations.
Together, we can demonstrate to pharmaceutical and bio-tech companies that there are many of us. Please join. This is another safe place to give and gain support to our community.
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