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Coordinating Committee

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Christina SanInocencio is a founding board member for Coalition to Cure CHD2, a nonprofit organization dedicated to advancing research in CHD2-related neurodevelopmental disorders. Prior to her role with CCC, Christina founded the Lennox-Gastaut Syndrome (LGSF) and served as first president then executive director from 2008-2020. She also serves the rare epilepsy community as a consultant and as a qualitative health communication researcher. The impetus behind her involvement in the rare epilepsy community, and her decision to form the LGS Foundation over 15 years ago, is her 36-year-old brother Michael who has been living with LGS for over three decades. Christina is incredibly proud to have played a role in the creation of REN in 2013 and hopes to continue to make valuable contributions to the rare epilepsy community, and the Rare Epilepsy Network, in years to come. 

Christina SanInocencio, PhD, CPH, CNP | REN Chair

Board Member, Coalition to Cure CHD2

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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 Vice-Chair

President & Co-Founder, International Foundation for CDKL5 Research

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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.

Kristina Hone, MBA

Board Chair & Executive Director

CASK Gene Foundation

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Christina Janes is the Director of Outreach and Content Development for the international non-profit Jordan’s Guardian Angels. In this role, Christina is in charge of media and family outreach, messaging strategy and dispersal of information and content to JGA’s global community that may assist JGA’s families, clinicians or researchers in spreading the word about Jordan’s Syndrome. Christina also hosts the JGA podcast ‘A Rare Reality’. She is an Emmy award winning journalist having worked as an evening news anchor for more than 20 years in major TV markets. She is also the COO of JComm, Inc. an award-winning communications firm based in Sacramento, California. Christina lives just outside of Sacramento with her husband, Nick and two sons Jake and Luke and their goldendoodle, Chloe.

Christina Janes

Director of Outreach & Content

Jordan's Guardian Angels

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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 - Priya Balasubram

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.

Priya Balasubramanian

Associate Director of Research

CURE Epilepsy

ROxanne Cogil

Roxanne Cogil is the Executive Director of Regional Teams (AR, IA, OK) with the Epilepsy Foundation. She has worked with the Epilepsy Foundation since 2012, has a Bachelor of Science Degree from Iowa State University, is a Certified Brain Injury Specialist (CBIS) and completed the Mental Health USA First Aid Course for Adults and Youth. In a volunteer role, she serves on the Board of Directors for the Autism Society of Iowa, the Iowa Developmental Disability Council, the Iowa DHS Targeted Case Management Advisory Board, the Iowa DOT Transportation Coordinating Council and the SMART 2 Community Advisory Board. Roxanne's inspiration and passion for helping others with epilepsy stems from the journey with her daughter's intractable epilepsy, which included a clinical diagnosis of Rasmussen’s Encephalitis and Cortical Dysplasia, which led to a right hemispherectomy brain surgery in 2009 and a 2nd brain surgery in 2016 in order to attain seizure freedom.

Roxanne Cogil

Executive Director, Regional Team Associate 

Epilepsy Foundation

Roxanne Cogil

Executive Director, Regional Team Associate 

Epilepsy Foundation


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

Ex Officio

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Vanessa Vogel-Farley

REN Chair (2022-2023)

Data Governance Lead


Tuesdi Dyer 

REN Chair (2023)

CFC International &

Rasopathies Network

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Yssa DeWoody

REN Chair (2020-2022)

Founder, Ring14 USA 

Hypothalamic Hamartomas ( 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 

Ilene Penn Miller, JD, LLM

REN Director

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.

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

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 

2021 Coordinating Committee

Yssa DeWoody, Ring14

Vanessa Vogel Farley, Dup15Q 

Amanda Moore, Angelman

Tuesdi Dyer, CFC International 

Kathleen Farrell, Epilepsy Fnd

Priya Balasubramanian, CURE

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

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