Go Team
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Coordinating Committee

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Vanessa Vogel-Farley

REN Chair

Board Director, Dup15q Alliance

vanessa.vogelfarley@dup15q.org

Vanessa Vogel-Farley is the Executive Director of the Dup15q Alliance and also serves serves as the Data Collection Platform Lead for RARE-X. Previously, she was at the University of Minnesota, Center for Neurobehavioral Development. She has also served as the Clinical Research Coordinator for the Division of Developmental Medicine Laboratory of Cognitive Neuroscience, Boston Children’s Hospital, working on collaborations with scientists from MIT and Harvard examining several clinical populations, including autism. She possesses 15 years of experience in data collection methods as well as expertise in non-profit and research operations, patient advocacy and support, non-profit management, and broad knowledge of child development neuroscience/psychology research and administration.

"Having sat on the coordinating committee for the past 2 years and all of the things we have learned and heard feed back from the network members, I hope to help bring forward a clear reason and function of REN, both internally to the network members but externally in the larger rare epilepsy space."

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Amanda Moore

REN Membership

CEO, Angelman Syndrome Foundation

amoore@angelman.org

Amanda Moore has served in a senior leadership position for the YMCA of Greater Indianapolis for the past eighteen years. She started her Y career working in after school programs serving at risk youth and then transitioned into an Executive Director role. She has her Masters in Leadership Development as well as a Certificate in Fundraising from the Indiana University School of Philanthropy. In 2015, Amanda and her husband Adam were blessed with adopting twin boys Jackson and Baden. In 2016, Jackson was diagnosed with Angelman Syndrome and at that time Amanda vowed to take action to do what she could for Jackson and individuals like him. She served on the Angelman Syndrome Board for one year and now is serving in the role as CEO of the Angelman Syndrome Foundation.

"How can we work together to serve a larger purpose and goal. I hope to work together with like minded leaders to work hard to support the team to getting to the finish line of our goals. I have learned so much from others already, and would love to engage more."

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Priya Balasubramanian

REN Website & Communications

Assoc. Dir.  of Research,

CURE Epilepsy

priya.balasubramanian@cureepilepsy.org

Priya Balasubramanian, PhD, is Associate Director of Research at CURE Epilepsy where she oversees their investigator-initiated grants programs. In this role, she manages CURE Epilepsy’s research portfolio, supports new research initiatives, and acts as a scientific liaison to other teams.

Priya obtained her doctorate degree in Molecular Biology from the University of Southern California and has over 10 years of experience leading research studies to understand and develop therapies for rare diseases, including Laron Syndrome and Prader-Willi Syndrome.

"An improved understanding of rare epilepsy diagnoses, treatments and best practices amongst caregivers and providers, as well as driving research to understanding common mechanisms across the rare epilepsies so we can expedite therapy development."

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Tuesdi Dyer

Grants & Fundraising

REN Executive Director, CFC International

tdyer@cfcsyndrome.org

Tuesdi Dyer is the Executive Director of CFC International and currently lives in Arizona with her husband Brent, and two sons, Ellis and Emmett. Emmett was diagnosed with CFC Syndrome at 4 months old. Tuesdi is a Certified Fundraising Executive (CFRE), and has dedicated more than two decades of her career to nonprofit leadership in fundraising, operations and capacity growth. Previously, she served as a Director at the Nonprofit Leadership Center, where she provided coaching for nonprofit leaders and life cycle management. She has also been a university and community instructor in nonprofit business planning. Tuesdi has served on numerous non-profit boards focused on the arts, health equity, education and child welfare, and is a former President of the Junior League of St. Petersburg. She is currently on the Global Genes Foundation Alliance Leadership Council, and has served on the Advisory Council of Johns’ Hopkins All Children’s Hospital in St. Petersburg, Florida. She has been recognized by the Chamber of Commerce and Tampa Bay Business Journal for her career and volunteer work. She was also a 2020 nominee for Global Genes' Rare Champion of Hope. Tuesdi holds a B.A. in Political Science from Texas A&M University.

"I believe it's imperative that capacity for the organization be well planned so that

a wealth of institutional knowledge is shared rather than existing among a few." 

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Karen Utley, BSN, RN

President & Co-Founder, International Foundation for CDKL5 Research

kutley@cdkl5.com

Karen Utley's personal journey and experience with DEE's began when her daughter, Samantha, had her first seizure in 2006 and was diagnosed with CDKL5 Deficiency Disorder in 2008. Through her work with the International Foundation for CDKL5 Research over the past 13 years, she has learned the importance of community building and ensuring the patient is the center and focus through all stages of treatment development. Out of necessity, she became an expert in advocacy, community building, and representing her community in discussions with researchers and industry. She is committed to improving the lives of those affected by rare epilepsies and supporting organizations in their growth and development.

"I hope REN would continue to be a source of support for rare epilepsy groups by continuing to foster collaboration and offer educational opportunities in regard to how to grow your organization and help direct research and efforts in a powerful way to move science forward. If I can help mentor and share my experience to help another organization, that is a win for me."

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Rachel Patterson is the Senior Director of Federal Relations & Policy for the Epilepsy Foundation, where she advocates for people with epilepsy and their families in federal policymaking. Her family is affected by rare epilepsy; her younger sister was born with Wolf-Hirschhorn (4p-) syndrome. Rachel focuses on access to health care and disability rights policy.

"I am looking forward to learning more about the REN, its goals, and how I can help the REN achieve them. I hope we can work together to improve the lives of people and families affected by rare epilepsy."

Rachel Patterson, MPA

Senior Director, Federal Relations & Policy

rpatterson@efa.org

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Ilene Penn Miller, JD LLM

REN Director 

ilenepennmiller@gmail.com

Ilene Penn Miller consults with major national nonprofit organizations on strategic, program, and operation planning. Ilene counsels the national Epilepsy Foundation, TESS Research Foundation and other clients. She is the Epilepsy Leadership Council Advocacy Co-Chair on the 2020 NINDS Curing the Epilepsies Conference. She also serves as the Director for the Rare Epilepsy Network (REN) – composed of 70+ rare epilepsy organizations committed to improving outcomes for patients through collaborative research. Ilene is a former Advisor on the NIH National Institute for Neurological Disorders and Stroke (NINDS) Advisory Council (2013-2017) and an active member of the Epilepsy Leadership Council (ELC) and Epilepsy Learning Health System (ELHS). Previously, Ilene co-founded and is past President of Hope for Hypothalamic Hamartomas (hopeforhh.org). 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). She has recently published the Rare Epilepsy Landscape Analysis (RELA) and an editorial in Epilepsy & Behavior - Raring For Change.

"New rare epilepsy diagnoses are exploding as genetic testing, imaging, and other diagnostics improve. REN brings all of these voices under one network where we can collectively increase public awareness, encourage research towards improved outcomes and cure, and leverage scarce resources!"

Ex Officio

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2021

COORDINATING COMMITTEE

Yssa DeWoody, Ring14 USA 

Vanessa Vogel-Farley, Dup15q 

Amanda Moore, Angelman Syn

Tuesdi Dyer, CFC International

Kathleen Farrell, EF 

Priya Balasubramanian

2020

COORDINATING COMMITTEE

Hillary Savoi, The Cute Syndrome 
Kathleen Farrell, EF 
Kris Pierce, GETA 

Yssa DeWoody, Ring14 USA 

Vanessa Vogel-Farley, Dup15q 

Leah Schust, Families SCN2a
Virginie McNamar, Syngap Research Fund 

Heidi Grabenstatter, CDKL5 

JayEtta Hecker, Dee-P

2019

TRANSITION COMMITTEE

Geraldine Bliss, Cure Shank
Kim Nye, Tess Research
Hillary Savoie, The Cute Syndrome

Steve Roberds, TSC Alliance

JayEtta Hecker, Elliotts Wishes

Vanessa Vogel-Farley, Dup15q

Yssa Dewoody, Ring14

Coordinating Committee Leaders

Yssa DeWoody

REN Chair (2020-2022)

Founder & President, Ring14 USA 

yssa@ring14usa.org