Kimberly Nye, Executive Director
Kim is the president and co-founder of the TESS Research Foundation, a 501(c)(3) public charity that aims to find better treatment options and ultimately a cure for SLC13A5 Deficiency.
Kim holds a BA from Princeton University where she graduated magna cum laude and Phi Beta Kappa. She did a postbac at Oxford University. Over the last decade Kim has been involved with the pediatric neurology and medical genetics community in the United States. She is currently on the Steering Committee for the Rare Epilepsy Network (REN), a member of the Epilepsy Leadership Council, a Lay Reviewer for Citizens United for Research in Epilepsy (CURE), and a Reviewer for the Epilepsy Foundation’s Shark Tank Competition. She is a current Chan Zuckerberg Initiative Rare As One grantee.
Kim lives in California with her husband, Zach, and their four kids. Two of their children have SLC13A5 Deficiency, a severe form of epilepsy. As the mother of two children with epilepsy, Kim has witnessed 100,000s of seizures—a claim she hopes fewer moms will be able to make five years from now. This is a volunteer position.
Emily Hsu, Operations Manager
Before becoming operations manager for TESS Research Foundation, Emily had been volunteering for TESS since before their founding in 2015. She began as the Foundation’s webmaster and has since taken on several other roles for the organization, including working as an admin, as a database manager, and as a producer of educational outreach videos. Emily has a BA in English from Bryn Mawr College. She can be reached here. This position is made possible through our Chan Zuckerberg Initiative Rare As One Grant.
Cat Gasol, MA, Director of Communications
Catherine is the Director of Communications for TESS Research Foundation. She has a work background in Communications, Sales, Business and Marketing and a Master’s Degree in Communication Management from University of Southern California. She is the aunt of two children with SLC13A5 Deficiency and knows how devastating this disease is for families. Catherine is determined to help raise awareness, connect families and find a cure. This is a volunteer position.
Nicole Windisch, Family Outreach
Nicole lives in New York with her husband, Rich and their 3 kids, James, Matthew and Meredith. Meredith has the SLC13A5 mutation. Nicole found the TESS Research Foundation while researching Meredith’s condition. Since then, she has taken an active role in raising awareness and fundraising. Nicole created our silicone bracelet fundraiser and is determined to help find a cure. This is a volunteer position.
Mirit Callioni, Accounting
Mirit holds BS in Finance from SJSU and has years of accounting experience in managing financials and accounting for small to medium-sized businesses. Non-profit has become her passion since she has been volunteering with TESS since 2016 and has been responsible for implementing and managing the financial processes of the Foundation. This is a volunteer position.
Ilene Penn Miller, Strategic and Operational Planning Consultant
Ilene Penn Miller is a results-driven leader with 20+ years of experience in nonprofit management, strategic planning, coalition building, marketing, fundraising, and program development and oversight. Ilene consults with major national nonprofit organizations on strategic, program and operation planning. She is a passionate advocate with proven ability to develop a vision, achieve consensus and deliver results, both in for-profit and in nonprofit settings.
Ilene serves as the volunteer director for the Rare Epilepsy Network (REN) and Advocacy Co-Chair on the 2020 NINDS Curing the Epilepsies Conference. She has recently published the Rare Epilepsy Landscape Analysis (RELA) and an editorial in Epilepsy & Behavior – Raring For Change. She is also an active participant on the Epilepsy Leadership Council (ELC), the Epilepsy Learning Health System (ELHS) and a former Advisor on the NIH National Institute for Neurological Disorders and Stroke (NINDS) Advisory Council (2013-2017). Previously, Ilene co-founded and is past President of Hope for Hypothalamic Hamartomas (hopeforhh.org) (2009-2019). Ilene served as Executive Director of the Cure for Lymphoma Foundation and as a Senior Associate at Podesta Associates where she counseled a coalition of major national cancer advocacy organizations and implemented legislative, executive branch, grassroots, and media strategies to increase federal cancer appropriations.
Ilene earned a B.S. in communications from Boston University; a J.D. from the Columbus School of Law at Catholic University of America (Washington, D.C); an LL.M. in advocacy from Georgetown University Law Center (Washington, D.C) and a Nonprofit Management Certificate from Georgetown University (Washington, DC). This position is made possible through our Chan Zuckerberg Initiative Rare As One Grant.
Maria Geslin, International Family Outreach
Maria lives in Luxembourg with her husband, Laurent and their two daughters Sophie and Alice. Alice has been diagnosed with SLC13A5 Epilepsy. While searching for other families with the same condition, Maria learned about TESS Research Foundation.
Maria earned a BS in Banking and Stock Exchange from the Academy of Economic Studies in Bucharest and has been an ACCA affiliate since February 2014. Maria is working as responsible of compliance for a regulated company in Luxembourg.
Maria will help with increasing awareness and strengthening our European network. Maria is determined to help find a cure. This is a volunteer position.