Our Team-old

Our Team

JUSTIN WEST

Co-Founder

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

Justin@KCNT1Epilepsy.org

SARAH DRISLANE

Executive Director

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.

Sarah@kcnt1epilepsy.org

ALI ROSENBERG

Scientific Engagement Director

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.

BRAD BRYAN, PHD

Data Strategist Lead

Brad is a passionate and driven business executive with a diverse background encompassing academia, business, and military service. He has a PhD in BioMedical Sciences, with a deep understanding of scientific research methodologies and a passion for exploring new frontiers. Brad’s MBA equipped him with a solid foundation in business strategy, operations, and leadership.

Megan Wright

Parent Liaison

Amanda Abuhl

Special Projects

Parent Support Specialists

Abigail

Andy

Ana

Angela

Chloe

Heather

Kristy

Justin

Tammy Williams

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.

Owen Billman

Chairman

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 is a valuable asset to the KCNT1 Epilepsy Foundation.

Justin West, MD

President, co-founder

Norman Metcalfe

Treasurer

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.

Margot Goodkin, MD PhD

Secretary

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 allow her to provide a fresh perspective and valuable guidance to KCNT1 Epilepsy Foundation.

Bonnie Royster

Director

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

Samantha MacMechan

Co-Founder

Samantha works as an executive with an international skin care company and credits her business acumen for providing a roadmap for the Foundation and complementing the legal and medical expertise of other founders.

Joe Ricculli

Director

Joe is a strategic communications leader in the biopharma industry, combining global health expertise gained through his transformative Peace Corps service with a sophisticated understanding of pharmaceutical communications. As a Director at Novartis, he leverages his unique background to drive narrative and impact across diverse disease areas, bridging scientific innovation with compelling storytelling.

Jason Kaufman

Director

Jason leads the government services practice at Lincoln International, a global investment bank focused on private capital markets. Jason advises private equity sponsors and founders in executing merger and acquisition transactions. 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.

Dewey McLin, PhD

Director

Dewey is neuroscientist and Medical Affairs pharmaceutical executive who has spent much of his career helping build companies which are developing drugs in the neurology and rare disease space.

Dewey served as Vice President, Medical Affairs for Longboard Pharmaceuticals, supporting the development of treatments for rare neurological conditions, including bexicaserin for the treatment of seizures associated with developmental and epileptic encephalopathies (DEEs). Prior to working on bexicaserin, Dewey was part of the Medical Affairs team at Greenwich Biosciences, helping launch Epidiolex (cannabidiol) for the treatment of seizures associated with Lennox-Gastaut syndrome, Dravet syndrome and tuberous sclerosis complex.

Dewey earned a doctorate degree and subsequently held an adjunct faculty position at the University of California, Irvine in Neurobiology and Behavior, and has held adjunct faculty positions at several other institutions.

Meet Our 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.

Justin West, MD

More About Justin

As a plastic surgeon Justin West spends his days fixing human bodies. Yet, when his son Andrew began experiencing seizures as a newborn and was diagnosed with KCNT1 epilepsy in 2017, he and his wife Lisa felt helpless. Both surgeons, their initial thought was to launch their own research foundation, however, conversations with experts in rare disease changed their minds.

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Seth Greenblott

More about Seth

Seth and Susan Greenblott recall the day their infant daughter Lucy was diagnosed with KCNT1 epilepsy. Amidst their fear and disbelief, a clinician handed them a one-page ‘fact’ sheet about the condition.

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Samantha MacMechan

More About Samantha

Every parent of a child with a rare disease knows the conflux of emotions that accompanies diagnosis: shock, disbelief, fear, confusion and so much more.

“Sitting in that hospital, receiving that diagnosis and not knowing what to do with that information, “ Samantha MacMechan recalls of her daughter Charlotte’s KCNT1-related epilepsy diagnosis. “And, for me being a first-time mom, receiving that diagnosis and feeling like the world was going to end.

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Our Team

JUSTIN WEST

SARAH DRISLANE

ALI ROSENBERG

BRAD BRYAN, PHD

Megan Wright

Amanda Abuhl

Parent Support Specialists

Abigail

Andy

Ana

Angela

Chloe

Heather

Kristy

Justin

Tammy Williams

Board of Directors

Owen Billman

Justin West, MD

Norman Metcalfe

Margot Goodkin, MD PhD

Bonnie Royster

Samantha MacMechan

Joe Ricculli

Jason Kaufman

Dewey McLin, PhD

Meet Our Founders

Justin West, MD

More About Justin

Seth Greenblott

More about Seth

Samantha MacMechan

More About Samantha

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