David Burley – Board Chair
David is a lifelong technologist; his career started teaching others how to use the internet while in high school. With this new communication medium, David was able to forge new relationships with those in the Open Source Software movement, making software available to the world at no cost. Attending both Lorain County Community College and then the University of Cincinnati for Computer Engineering, he was able to bring together his passions for helping others and technology. He currently is the Chief Technology Officer at Upic Solutions, a non-profit service organization for United Way.
After years of being sleepy, David was diagnosed with idiopathic hypersomnia in his 20s. His story is like many others—a long journey with many unanswered questions. He hopes his non-profit background and passion for helping others can bring more awareness of IH and improved options for those living with it.
Rebecca King – Board Secretary
Rebecca's work at the foundation is focused on advocating for hypersomnia research, access and affordability of medical care and prescription medications, and increasing understanding of hypersomnias. Prior to receiving an idiopathic hypersomnia/narcolepsy type 2 diagnosis and joining the Hypersomnia Foundation, Rebecca’s career included service as a U.S. Army officer, leadership roles in the insurance industry, and small business ownership.
Robert Ambrefe, RPh – Board Member
Bob brings broad professional experience to the Hypersomnia Foundation's Board. Coming from a family of pharmacists and working as a practicing pharmacist for over 30 years, Bob has practiced in all settings of pharmacy: retail, hospital, and industry, including serving as the Associate Chief of Pharmacy for the VA in Boston, co-owner of the Village Pharmacy of Lynnfield, and has held key management positions at Bristol Myers Squibb. He has also worked with physicians in compounding Flumazenil for patients with hypersomnia. Bob currently works for Alkermes in Waltham, Massachusetts and for over 20 years, served as the Chairman of the Board of Health in Middleton, Massachusetts.
Anjel Burgess, JD – Board Member
Anjel boasts impressive academic credentials and has developed a wealth of knowledge in the area of disability law. She received her BA from North Carolina State University, an MA from the University of South Florida and her JD from Georgia State University. Prior to joining Burgess & Christensen, Anjel practiced civil litigation with an emphasis on insurance defense. Known for her excellence in representation, Anjel specializes in the areas of Social Security Disability Law for adults and children, Veterans Disability and Guardianships.
Anjel has been the featured speaker for several organizations, support groups, and the local bar association. She serves on the Board of Directors for PLAN of Georgia, an organization devoted to optimizing life for adults with mental illness and developmental disabilities. She is also a member of the Georgia & Cobb County Bar Associations, the National Organization of Social Security Claimant’s Representatives (NOSSCR) and the National Organization of Veterans’ Advocates (NOVA).
Diana Kimmel – Board Member
Diana has been supporting the work of and volunteering with the Hypersomnia Foundation since its inception in 2013—at conferences, during online events, and, since 2019, as a member of the Hypersomnia Foundation's PAAC (Patient Advocacy and Advisory Council). She has participated in and given presentations to people with idiopathic hypersomnia and their supporters at HF conferences and at conferences and events for medical and sleep medicine professionals.
After being diagnosed in 2011 with idiopathic hypersomnia (IH), Diana focused on creating a supportive community for people living with IH and their loved ones. Her passion for community outreach led her to start holding monthly support group meetings in Atlanta, which have been meeting regularly since 2014. She also co-founded the Hypersomnia Alliance and co-facilitates IH support retreats, known as Snooze Cruises.
"I am excited to join the Board of the Hypersomnia Foundation," said Diana, "and look forward to leveraging my community lens and passion into the future work of the foundation. "
Veronica Moore, MA – Board Member
Veronica is an experienced patient advocacy manager, health equity and inclusion advocate, and public health educator. She has more than 13 years of experience engaging with advocates, patients, caregivers, advocacy groups and healthcare professionals on a range of topics spanning from clinical trial design, data collection and analysis, patient advocacy, patient engagement & recruitment, patient education, community engagement, and pharmacovigilance. More than half of her professional career has been dedicated to working with rare disease patient communities. She holds a Bachelor of Science in Public Health from East Carolina University and a Master of Arts in Sociology from North Carolina Central University.
In 2018, Veronica presented at the Hypersomnia Foundation conference on the topic of clinical trials awareness and education. In 2020, she was diagnosed with a hypersomnia. This diagnosis amplified her desire to passionately advocate for equitable access to diagnosis and treatment of hypersomnias among underrepresented communities.
Veronica currently is a senior patient advocacy manager at a global biotechnology company focused on supporting rare and rheumatic/autoimmune disease patient communities. In addition, Veronica currently serves on various advisory boards at Duke University and a host of other nonprofit organizations that are focused on diversity, equity, and inclusion (DEI); community engagement among underrepresented communities; and rural settings. Veronica is a longstanding and significant contributor to the rare disease community, and she is committed to addressing health inequities in rare and marginalized patient communities.
Andrew Powell, JD – Board Member
Andrew has had a successful career in the biopharmaceutical industry and is responsible for HF’s outreach to companies that share the Foundation’s commitment to developing better medicines to treat disorders of hypersomnolence.
As a private sector executive he worked with teams developing transformative drugs, and was instrumental in some of the largest acquisitions of development stage companies in recent years.
He is former Chairman of the Board of Landec, Inc., a public diversified health and wellness company and has served on the boards of NASDAQ-listed biotechnology companies Aclaris, Inc., Synthorx Inc., Silverback Therapeutics and Motif Bio plc. He is a trustee of the World Affairs Council, active in the Silicon Valley angel investment community, and advises the enterprise arm of the Gladstone Institutes at the University of California.
Andrew attended Winchester College in England, is a Morehead Scholar from the University of North Carolina at Chapel Hill, and earned a JD at Stanford.
Michael Sparace – Board Member
Michael formally joined the Hypersomnia Foundation’s Board of Directors in October 2021 after volunteering for several years, especially helping with technology during in-person and virtual conferences and webinars. He is passionate about HF’s work, as his wife has idiopathic hypersomnia. Michael holds a Bachelor of Arts in Philosophy from Clemson University and has a background in Product & Project Management. He specializes in leading teams of developers and brings his wealth of skills and experience to the Hypersomnia Foundation.
Edward Stepanski, PhD – Board Member
Ed began his academic career in sleep medicine, and his published research includes demonstrating the impact of sleep fragmentation on daytime alertness, showing the importance of hyperarousal in patients with insomnia, and treatment outcomes for patients with chronic insomnia. Ed previously served on the Board of Directors for the American Board of Sleep Medicine and the American Academy of Sleep Medicine [AASM] for many years and chaired the AASM committee that established the subspecialty of Behavioral Sleep Medicine. More recently, Ed has had executive roles in private sector research companies where he has innovated use of real-world data to answer important healthcare questions, and in using molecular genomic data to advance precision medicine. He is excited to combine his knowledge of sleep medicine with other research experience to advance the aims of the Hypersomnia Foundation.
Claire Wylds-Wright, MFA – Chief Executive Officer
Claire Wylds-Wright, Grad Phys SRP, MCSP, MFA has been working in sleep advocacy for a decade following the onset of her daughter’s diagnosis of narcolepsy in 2010 at the age of 3. In August 2022, she was appointed CEO of the Hypersomnia Foundation whose mission it is to engage, inform and champion the global sleep community to improve the lives of people with idiopathic hypersomnia and related sleep disorders.
Born, raised, and educated in England, Claire trained as a physical therapist at St Thomas’s Hospital, London, and practiced as a clinician in the British National Health Service and in private healthcare specializing in chronic pain management, community care, trauma, medico-legal representation and latterly senior management. In 2011 she moved her family from Bristol, England to the USA to secure expert care and treatment for Mathilda under Professor Emmanuel Mignot at Stanford Center for Narcolepsy research, California. Once Mathilda’s health stabilized, she began writing on narcolepsy and the impact of a pediatric diagnosis on the family unit–thereby, giving voice to children and their caregivers and exposing the under-recognized aspects of a pediatric sleep disorder diagnosis.
Her book Waking Mathilda—A Memoir of Childhood Narcolepsy (published 2017, Palace Gate Press) won the International Reader’s Favorite 2017 Silver Medal and has also been optioned for a motion picture. Waking Mathilda is widely read and globally distributed as an educational tool throughout industry and has been featured in mainstream media, on national (US) radio and in the UK press.
Until 2021 she has held the position of Executive Director for Wake Up Narcolepsy bringing progressive redirection to educational and online support services and hosted the first narcolepsy podcast—Narcolepsy 360 with a global audience of over 80,000.
In 2021, she co-founded Sleep Consortium Inc., the first ever interoperable sleep disorder data collection portal, and serves as Chief Experience Officer.
This year, Claire has been awarded an MFA (prose) from the University of St. Andrews and the Citizen Scientist award by TREND—a US based social listening and acquisition research organization. She lives and works in Los Angeles and when out of the office, loves nothing more than being with her children, Liberty, Elliot, and Mathilda and playing Pickle Ball.
Lindsay Jesteadt, PhD – Chief Operating Officer
Lindsay Jesteadt, PhD was appointed to the Hypersomnia Foundation as COO in August 2022, bringing executive operational skills, her experience in research and her passion for improving the lives of people affected by sleep disorders.
Lindsay began her career in education, focusing on Compliance, Special Education Policies and Procedures in the State of Florida—work that challenged the current provisions of State Education for disadvantaged and under-represented children. This led Lindsay to occupy roles in educational leadership, across several state school districts while representing parents and advocating for individual children with complex health, intellectual and behavioral needs.
In 2014, following the abrupt onset of Type 1 Narcolepsy in her 4-year-old son Noah, Lindsay’s life took on a new trajectory—one that merged her professional expertise and personal passion to help Noah and children like him. After independently identifying and securing Noah’s diagnosis but unable to find local treatment, the Jesteadt family traveled to Stanford Center for Narcolepsy Research California, where eight years, later Noah remains a patient of Prof. Emmanuel Mignot.
At this time, Lindsay began working ambitiously towards improving lives of children with narcolepsy, a role that crystalized formally as Director of Development for Wake Up Narcolepsy, where she served 4 years re-structuring and re-building the organization. Creating and implementing multiple narcolepsy programs, educational events and support services for the sleep community tapped into Lindsay’s organizational gifts and vision for a better future for all those who suffer with disordered sleep. Her commitment to the pediatric population and understanding of the parent/care-giver role has since played a pivotal role advising industry, patient advocacy organizations and supporting parents navigating the early years of childhood sleep disorders. She is called upon for her extensive research knowledge, her capacity to engage and contribute on both large-scale public platforms, one-on-one supportive roles, and her global knowledge base of therapeutic options, clinical trials, and trends in sleep research.
In 2021, she co-founded Sleep Consortium Inc., a not-for profit (501(c)(3) organization created to accelerate next generation research, disease understanding and therapy development for those living with Central Disorders of Hypersomnolence (CDoH) and related diseases and serves as Chief Executive Officer.
Lindsay holds a PhD, an Ed.S and two M.Eds from Florida Atlantic University, further qualifications in educational leadership and is also a Program Coordinator for the World Sleep Society. When out of the office she enjoys traveling with her family.
Amy (Haraden) Desmarais – Treasurer/Chief Financial Officer
Amy is a long-time supporter of and volunteer for the Hypersomnia Foundation. She was a member of the Board from 2017-2020, and prior to being elected to the Board she was one of the founders of the PAAC. Amy is a graduate of Stonehill College (BSBA) and Northeastern University (MSA) and brings expertise in both accounting and SEO (search engine optimization).
Evan Desmarais – Technical Officer
Evan joined the Hypersomnia Foundation as Technical Officer in 2019. He holds a Bachelor of Science in Computer Science from Worcester Polytechnic Institute, and brings a wealth of knowledge to the foundation with his experience filling technical roles in Healthcare IT and Digital Engagement Software organizations. He specializes in software and web development, as well as IT infrastructure, cloud computing, data analytics, and integration.
Evan became aware of idiopathic hypersomnia, as his wife was diagnosed shortly after they met. Since her diagnosis, Evan has been a supporter of the Hypersomnia Foundation’s mission and is excited to join the organization in an official capacity.
Frances Smalldridge – UK Liaison
Frances grew up in Bristol, UK before moving with her family to Kelowna, Canada in 2012. She is now studying medicine at the University of Buckingham, back in the UK. She has always filled her spare time with extracurriculars, including sports, music, volunteering, and personal projects. “However,” Frances notes, “while my love for these activities never diminished, my ability to muster the energy required got increasingly worse. I was ultimately diagnosed with Idiopathic Hypersomnia (IH)/Type 2 Narcolepsy in 2019.”
Frances explains, “I discovered the Hypersomnia Foundation while searching for information and support on a condition I then knew nothing about. The foundation equipped me to understand, manage and move forward with IH, and gave me confidence to continue my pursuit of a career in medicine.
It has become evident to me how challenging it can be to live with a condition that is both invisible and not yet a household name, particularly with a new diagnosis or in a new country. By acting as a UK liaison for the Hypersomnia Foundation, I hope to aid others in similar situations, by extending the support of the Hypersomnia Foundation, and all its resources, internationally. I greatly look forward to increasing awareness of IH and advocating and providing support for those affected by it and similar conditions.”
Stephanie Wells – Operations Manager
Stephanie is a fundraising professional with over 35 years of experience developing fundraising strategies, building and training Boards, and creating marketing and awareness campaigns for a myriad of non-profit organizations. She has given her development expertise to educational, recreational, medical, and cultural organizations throughout the United States. Prior to working in the non-profit sector, she was a producer and writer for mainstream cable and network television.