Support / Educational Resources / Research

KCNT1 EPILEPSY FOUNDATION

 
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OUR MISSION

We are dedicated to accelerating the discovery of a disease-modifying treatment for our KCNT1 Epilepsy warriors!  The Foundation is working to identify and connect families affected by KCNT1-related epilepsies, provide patient perspectives to physicians, researchers, and pharmaceutical industry professionals from all over the world and support preclinical and clinical efforts to develop a cure. These scientists are doing amazing work: hope is truly on the horizon!  

Leadership

Justin West, M.D. 

Co-Founder, President, Director of Clinical Medicine

Justin@KCNT1Epilepsy.org 

Justin West is a physician and father of three. His youngest son Andrew was diagnosed with KCNT1 related epilepsy at 9 months of age.  He is a co-founder and the President and Director of Clinical Medicine of the Foundation. He works with researchers and industry to identify and evaluate potential therapeutics.

Read more about Justin’s family.

Year-end letter

Andrew(boy in stroller with KCNT1) and Aunt Sarah

Sarah Drislane

Executive Director

Sarah@kcnt1epilepsy.org

Sarah is the great-aunt of a KCNT1 warrior and is dedicated to finding treatments for her nephew and all the other warriors. She is a former speech-language pathologist with experience in business and marketing. She is focused on helping the Foundation to achieve its mission of accelerating research and supporting the KCNT1 community. Contact her to learn more about the Foundation programs, to volunteer, or with any questions.

Ali Rosenberg, PhD

Scientific Outreach Officer

Ali@kcnt1epilepsy.org

Ali is a scientific communication expert and cellular with a strong background in microbiology, genetics, regenerative biology, and neuroscience. Her diverse professional experience, including business development, scientific consulting, and successful grant writing bring expertise to help move the mission forward.

 

Founders

In 2019, several families affected by this catastrophic diagnosis came together to form the foundation. Initiated by Seth Greenblott who hosted the first KCNT1 conference in Baltimore, the foundation has since grown to include other families and friends including Justin West and Samantha MacMechan.



Board of Directors

Our all-volunteer Board of Directors bring a wealth of experience from managing business operations, working with FDA and the drug development process, to running nonprofit foundations. We are grateful for the time our Board contribute towards our mission and goals.

If you are interested in volunteering in some capacity, please contact us!  We want to hear from you and we encourage you to join our cause and spread the word in any way you can.

white background and six circles with photos of KCNT1 Epilepsy Foundation board members
  • Norman Metcalfe has an extensive background in finance and investments. He is chairman of the Tejon Ranch Company, a diversified real estate development and agribusiness company located in Southern California; and serves as an investor and a senior adviser for a private equity fund. Metcalfe is also a member of the Board of Advisors for the Fred Hutchinson Cancer Center in Seattle.

    Previously, he was vice chairman and chief financial officer of the Irvine Company, one of the nation’s largest real estate and community development companies.

    Prior to the Irvine Company, Metcalfe spent more than 20 years in various real estate, corporate finance and investment positions with the Kaufman and Broad/SunAmerica family of companies. These positions included president and chief investment officer of SunAmerica Investments and a member of the board of directors and chief financial officer of Kaufman and Broad Home Corporation (currently known as KB Home).

    Metcalfe earned a bachelor’s in mathematics and a master’s in business administration in finance from the University of Washington.

  • Jason is the President of The Chertoff Group, a risk management and investment banking advisory firm specializing in national and cybersecurity sectors. With 11 years of experience at the firm, Jason helps clients execute M&A transactions and is a General Partner at MC2, a growth equity firm investing in cybersecurity. He graduated from Georgetown’s School of Foreign Service and received his MBA from Darden at UVA. Jason is an active member of various organizations, including the Association for Corporate Growth and has led fundraising efforts for the Boy Scouts and others. Jason has a proven track record of fundraising and working collaboratively on committees and teams to set and achieve goals.

  • Margot is an ophthalmologist specializing in the treatment of glaucoma and holds a PhD in Microbiology. She previously served as a Medical Officer at the US FDA and worked as an attending physician at the Washington DC Veterans Affairs Medical Center. Margot received her medical and PhD degrees from Mount Sinai School of Medicine and completed her residency and fellowship training in ophthalmology at the University of Pennsylvania and Bascom Palmer Eye Institute, respectively. Margot has served on several boards and committees, including the Association for Research in Vision and Ophthalmology Commercial Relationships Committee and the American National Standards Institute Accredited Standards Committee for Ophthalmics.

    Margot’s experience and expertise span the disciplines of clinical and academic medicine; non-clinical research; government service; and clinical development in the pharmaceutical industry. Her background and breadth of experience will allow her to provide a fresh perspective and valuable guidance to KCNT1 Epilepsy Foundation.

  • Bonnie is Executive Director, CdLS Foundation (CdLS/Cornelia deLange is a rare genetic disease). She managed financial call centers and major market processing teams. She has also worked at United Way as their Chief Operations Officer. The role was critical to her understanding key drivers of non-profit work - passion of the people involved in the issues and a committed staff.

    Bonnie has served on committees that include National Association of Health Services Executives; Big Brother/Big Sister Program Committee (2008-2012); and Western New England College Speaker Series (2006-2016). She also supports CdLS Foundation, ASPCA, and her religious organization.

    Bonnie will bring broad experience to non-profit operations management for rare-disease patients and other experiences that will be helpful for KCNT1 Epilepsy Foundation.

  • Owen Billman is the founder of Blake Real Estate, Inc., a commercial real estate development company located in Washington, DC. He has also served on several charitable boards, including the Junior Council for Children's National Medical Center, which he co-founded and co-chaired. Currently, Owen serves as the Board Chair for the American Heart Association, Greater Washington Region, where he chaired the Heart Walk in Washington, DC, raising almost $2.5 million. Owen's extensive experience with charitable boards includes fundraising, advocacy, board development, and event planning. His expertise will be a valuable asset to the KCNT1 Epilepsy Foundation.

  • Joe brings a experience in communications in the biopharma world and compassion from his work. with the Peace Corp. He is currently an Associate Director at Regeneron Pharmaceuticals, Inc.


Transparency

Forms and Policies

We understand the importance of transparency in our organization and the research that we fund. We pride ourselves on being efficient with donations and keeping our operating expenses to a minimum to ensure each gift brings us closer to a cure.


W-9 Tax Form
Whistleblower policy

Official 501c3 Letter

2022 990-EZ

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