Tuesday, May 14, 2019

KCNMA1 Channelopathy International Advocacy Foundation

If any other KCNMA1 patient is taking verapamil or another type of calcium channel inhibitor, I strongly urge you to ask your neurologist to provide information on the dosage and efficacy to the website: https://www.kciaf.org/. Knowing how patients respond to verapamil could be an important development in our understanding of this channelopathy, and I would like to see the neurologists share that information which may end up helping others in the group. (Facebook)

KCNMA1 Channelopathy International Advocacy Foundation https://www.kciaf.org/

We are a new and small organization with simple but ambitious goals:

Educate patients, families, the public and the scientific community about KCNMA1-associated conditions

Encourage and promote efforts to find effective treatments for the wide range of symptoms which can be caused by KCNMA1 mutations

Provide opportunities for patients and families to meet, whether in-person or otherwise, and share their experiences

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