Coordinating Committee
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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.​​
Karen Utley, BSN, RN | REN Chair
President & Co-Founder, International Foundation for CDKL5 Research
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Ana Rita Moreira is a Co-founder and Executive Director of v-ATPase Alliance, the first foundation dedicated to uniting families affected by v-ATPase disorders, a key cause of complex and often treatment-resistant epilepsies, including those linked to 3 genes also classified as Developmental and Epileptic Encephalopathies (DEEs): ATP6V0c, ATP6V0A1, ATP6V1A. v-ATPase is advancing research, and raising awareness. Driven by her child's ultra-rare diagnosis, Ana Rita leverages expertise in economics, branding, and communication to make a difference. Despite initial setbacks, her team is committed to pushing boundaries and reshaping the future in the rare disease landscape. Founded in November 2023, v-ATPase Alliance established a critical Patient Registry in 2024. In 2025, the focus shifts to aggressively funding research, developing disease models, characterizing conditions, and pursuing effective treatments and a cure.
Ana Rita Moreira | REN Vice-Chair
Co-Founder & Executive Director
v-ATPase Alliance
Kacie Craig, M.Ed is the Executive Director of The Cute Syndrome Foundation. Her daughter, Stella, was diagnosed with SCN8A at five months old and it was then her passion for advocacy was ignited. Kacie began volunteering for TCSF in 2018 and joined the foundation's Executive Leadership Team in 2020. It was in early 2022 that she transitioned from her long standing career in radiography leadership and education to a full time advocate. Kacie and Stella have both been featured in epilepsy awareness segments on KMOV Channel 4 News in St. Louis, Missouri and KY3 News in Springfield, Missouri.
Kristina Hone is Founder/CEO of CASK Gene Foundation. As a Therapeutic Recreation Specialist, she specialized in development disorders and traumatic brain injuries, until her life changed when her daughter was born with a CASK gene disorder, and resulting microcephaly, epilepsy, cerebral palsy, and communication disorders. Kristina shifted to technology program management, where she led quality control processes for an international data pipeline that now processes 2 million records daily, and initiated a global digital transformation affecting 500+ disparate apps. As an MBA, she returned to public service as a charter school board Trustee, before serving as their Special Education Director for three years. Merging her favorite aspects of her career, she now owns a medical clinic with her husband, and provides data science services for rare disease organizations. She’s passionate about sharing the power of data visualizations to translate and connect research meaningfully to patients, families, clinicians, and communities.
Kelly Muzyczka is a social scientist with a focus on health equity, social networks, and grounded and relatable data analysis and presentation. She loves to lead and learn from others.
Steve joined the TSC Alliance in 2011 as Chief Scientific Officer. In this role, Steve leads the development and execution of the TSC Alliance’s research strategy through partnerships and conversations with stakeholders including individuals and families affected by TSC, basic and clinical researchers in academia and industry, healthcare providers, government agencies, and other non-profit organizations. In 2016-2020 he served on the Advisory Council for NINDS. Together with the CEO, CFO, and Board, he developed a seven-year, $40 million Research Business Plan beginning in 2019 to grow the TSC Alliance’s research programs. Steve was awarded his PhD in Pharmacology from Vanderbilt University in 1992, after which he was introduced to rare disease research as a postdoctoral fellow at the University of Iowa studying the biology and genetics of muscular dystrophies. He then began a 16-year research career in the pharmaceutical industry prior to joining the TSC Alliance.
Julia Terrell is the Director of Community Relations at The Sturge-Weber Foundation. She lives in southern NJ with her husband Scott, her foster son and her daughter Marissa who has diagnosed with Sturge Weber Syndrome at 10 months old. She graduated from Bloomsbury University with a BS in Business Management and worked for many years in the finance world. After Marissa was born she moved to the nonprofit world where she has worked on social media, planning meetings, creating a collaborative effort at meetings including all the stakeholders to further the science of Sturge Weber syndrome.
Julia Terrelll
Director of Community Relations
The Sturge-Weber Foundation
Priya Balasubramanian, PhD, is the 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.
Brittany Miller started her journey with advocacy over 15 years ago when her youngest daughter Brooke was diagnosed with Aicardi Syndrome, Cerebral Palsy, and severe epilepsy. After receiving invaluable support and guidance from Phoenix Children's hospital and several local disability nonprofits- including Epilepsy Foundation Arizona, it inspired her to get involved in local, state and national advocacy sharing her parent perspectives and advocating on behalf of families raising children with disabilities. Channeling her grief over her daughter's difficult diagnosis into action, has been instrumental in Brittany's personal, parent and professional path. Currently, Brittany is the Executive Director of Epilepsy Foundation Arizona and New Mexico and is deeply honored to serve individuals with epilepsy and their families. It is an honor of a lifetime that she cherishes. She also serves on the Phoenix Children’s Neurosciences Patient and Family Advisory Council, the Patient Safety Committee and Patient Family Faculty. Her most valued role is being a wife and a mother to her three amazing daughters.
Brittany Miller
Executive Director of Epilepsy Foundation Arizona/New Mexico
Epilepsy Foundation of America
REN Staff
​Ilene Miller is an experienced nonprofit executive, recognized thought leader in the rare epilepsy community, and a devoted caregiver. She serves as Executive Director of the Rare Epilepsy Network (REN) advancing outcomes through collaborative research, advocacy, and education. She also leads the Epilepsies Action Network (EAN), which is driving efforts to secure a National Plan for Epilepsy. In addition, she co-leads the (Not So Rare) Epilepsies ECHO series, bringing expert clinical knowledge directly to frontline providers. Previously, Ilene served as Advocacy Co-Chair for the NIH/NINDS Curing the Epilepsies Conference (2017–2021) and as an advisor to the NIH/NINDS Advisory Council (2013–2017), where she helped shape national research priorities in epilepsy and neurological disorders.
Ilene holds a B.S. in Communications from Boston University, a J.D. from Catholic University’s Columbus School of Law, an LL.M. in Advocacy from Georgetown University Law Center, and a Nonprofit Management Certificate from Georgetown University.
Vanessa Vogel-Farley serves as the Research and Operations Director for the Rare Epilepsy Network. She maintains a broad knowledge of child development, neuroscience/psychology research, and administration, as well as expertise in non-profit and research operations, patient advocacy and support, and non-profit management. She possesses 20+ years of experience in data collection methods and research operations. Her research interests have centered on the processes underlying brain development and the genetic factors that can affect normal development.
Vanessa Vogel-Farley
Research & Operations Director
vanessa@rareepilepsynetwork.org
She is passionate about the value of the patient's voice in research, drug development, clinical trial design, development of related legislation, and quality-of-life decisions. She advocates for standardized data collection across diseases toward interoperability, data sharing, collaboration with other advocacy groups, and sharing resources whenever possible.
Coordinating Committee Service
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
Ilene Penn Miller, REN, Director
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
Heidi Grabenstatter, CDKL5
JayEtta Hecker, DEE-P
Virginie McNamar, Syngap Research Fund
Ilene Penn Miller, REN, Director
2021 Coordinating Committee
Yssa DeWoody, Ring14
Vanessa Vogel Farley, Dup15Q
Amanda Moore, Angelman
Tuesdi Dyer, CFC International
Kathleen Farrell, Epilepsy Fnd
Priya Balasubramanian, CURE
Ilene Penn Miller, REN, Director
2022 Coordinating Committee
Yssa DeWoody, Ring14
Vanessa Vogel Farley, Dup15Q
Amanda Moore, Angelman
Tuesdi Dyer, CFC International
Karen Utley, IFCR
Priya Balasubramanian, CURE
Rachel Patterson, Epilepsy Fnd
Ilene Penn Miller, REN, Director
2023:
Chair: Tuesdi Dyer, CFC International
Vice Chair: Christina SanInocencio, CHD2 (Chair effective Nov. 2023)
Membership: Karen Utley, IFCR (Vice Chair effective Nov. 2023)
Kristina Hone, CASK Gene Foundation
Julia Terrell, The Sturge-Weber Fnd
Meetings & Workshops: Priya Balasubramanian, CURE Epilepsy
Roxanne Cogil, Epilepsy Foundation
Ilene Penn Miller, REN, Director
2024:
Chair: Christina SanInocencio, CHD2
Vice Chair/Membership: Karen Utley, IFCR
Kristina Hone, CASK Gene Foundation
Julia Terrell, The Sturge-Weber Foundation
Meetings & Workshops: Priya Balasubramanian, CURE Epilepsy
Roxanne Cogil, Epilepsy Foundation
Ilene Penn Miller, REN, Director
2025:
Chair: Karen Utley, IFCR
Vice Chair: Ana Rita Moreier, v-ATPase
Membership, Julia Terrell, The Sturge-Weber Foundation
Meetings & Workshops: Priya Balasubramanian, CURE Epilepsy
At Large:
Kristina Hone, CASK Gene Foundation
Kacie Craig, The Cute Syndrome Foundation
Kelly Muzyczka, DEE-P
Steve Roberds, The TSC Alliance
Brittany Miller, Epilepsy Foundation