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KCNT1 SLACK EPILEPSY FOUNDATION INC

Cause Area

  • Children & Youth
  • People with Disabilities

Location

PO BOX 465CONTOOCOOK, NH 03229 United States

Organization Information

Mission Statement

The mission of the KCNT1 Epilepsy Foundation is to support research and drug development efforts focused on finding a cure for KCNT1-related epilepsy. The KCNT1 Epilepsy Foundation supports the KCNT1 community with educational resources and the latest research information.

Description

We are a small foundation of parent volunteers. To help run our organization and facilitate the research and drug discovery process the Foundation is funding or has plans to fund the following:

  • A patient registry The registry allows patients from around the world to input their data and provides the Foundation with a mechanism to contact them when trials become available. We need help managing the registry.

  • A biobank of patient blood and tissue samples will be made available to select researchers to support basic science research and drug discovery.

  • Ongoing data analysis efforts to track symptoms of the disease, what medications and therapeutics work, and how this disease effects families over time. We need help from clinical psychologists, physicians, data scientists.

  • We need help with the businessinfrastructure website updates, marketing and fundraising

  • We need help establishing a Grant process for academic and private programs in need of initial seed money or ongoing contributions to fund innovative research or promising therapeutics

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