Coordinating Committee
Dr. Christina SanInocencio is a board member for Coalition to Cure CHD2, a nonprofit organization dedicated to advancing research in CHD2-related neurodevelopmental disorders. Prior to joining the board for 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 35-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 hope to continue to make valuable contributions to the rare epilepsy community, and the Rare Epilepsy Network, in years to come.
"The momentum of REN is incredible! I would love to see (and contribute to) a strategic communications plan for REN that leads to 1) increased engagement for current and future members 2) new opportunities for advocacy initiatives and awareness of the rare epilepsies, and 3) targeted, strategic outreach to constituents of REN members."
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.
"I believe REN can be the pivotal change that we all need, for better understanding and treating epilepsies as more genetic etiologies are discovered at a rapidly increasing rate. It's only by tapping into the real-life experiences known best to the patients and families that we can fully comprehend the nature and impact of this debilitating condition."
Karen Utley, BSN, RN
REN Vice Chair
President & Co-Founder, International Foundation for CDKL5 Research
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."
Christina Janes
Dir. Of Outreach & Content Dev, Jordan's Guardian Angels
cjanes@jordansguardianangels.org
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.
"It's my hope that through strategic outreach efforts we can continue to grow REN's reach, helping it on its way to be an even more easily recognized national effort.."
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Jill Hawkins is a relentless advocate for her children, Charlotte and Cooper, two of the first patients in the world diagnosed with a rare genetic disease called FAM177A1 Disorder. A former school psychologist, she now devotes her time to managing the complex care of her children and running the FAM177A1 Research Fund, which she founded to support the FAM177A1 community and accelerate the development of treatments for FAM177A1 Disorder. Jill is a published author and featured speaker on rare disease-related podcasts and panels. She has a BA from the University of North Carolina and MEd from the University of Washington. She is a proud Buffalo, NY native, now firmly rooted in the Pacific Northwest with her husband Doug and their three children.
"I hope that REN can continue to be as supportive and helpful to other Patient Advocacy Group (PAG) leaders as it has been for me. I hope that REN will continue to leverage the power of collaboration with patients, researchers, clinicians and industry in order to improve the lives of everyone impacted by epilepsy."
Julia Terrell
Director of Community Relations, The Sturge-Weber Foundation
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.
"I hope to bring more awareness and further the mission in rare epilepsies by thinking outside the box and collaborating on ways to make it happen. I believe if you can dream it you can do it."
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."
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.
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
Vanessa Vogel-Farley
REN Chair (2022-2023)
Board Director, Dup15q Alliance
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
Virginie McNamar, Syngap Research Fund
Heidi Grabenstatter, CDKL5
JayEtta Hecker, Dee-P
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