By combining and focusing our knowledge and experiences we can help speed the development of safe treatments and make lives better. KCIAF.org is for patients, families, scientists, and physicians to all learn together.
— Sotirios Keros MD PHD, Sanford Children's Hospital and Co-Founder of KCIAF

Our Mission

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

My lab is working on figuring out how and why the various mutations in the KCNMA1 channel cause the many problems we see. We hope that this KCIAF partnership with patients, parents, and caregivers will advance our understanding of symptoms and help point the way to effective therapies.
— Andrea Meredith PhD, U of Maryland School of Medicine and Co-Founder of KCIAF.org

Short- and long-term PLANS

  • Find volunteers who can help: maintain and expand website, help with day to day duties.

  • Elect/select additional board members from among scientists, physicians, patients, and families

  • Create educational content for this site

  • Facilitate clinical research by obtaining clinical information with the help of the Sanford Health “Coordination of Rare Diseases at Sanford (CoRDS)” program

  • Develop social media presence, facebook, twitter, etc, with help of knowledgeable volunteers

  • Solicit donations in order to fund activities and provide patient grants and research grants

  • Sponsor meetings and conferences for advocacy and sharing knowledge, updates and achievements

  • Create and recruit non-board members for a Community Interaction Committee and a Scientific Advisory Committee