hypersomnia logo
Donate
Donate

Who We Are

Our team is experienced, passionate, and dedicated to the hypersomnia community. We have direct knowledge of the significant challenges that idiopathic hypersomnia (IH) and related sleep disorders can create for individuals and families in many aspects of their lives and are committed to raising funds for research and providing programs for those impacted by idiopathic hypersomnia. Narcolepsy and Kleine-Levin Syndrome.

Our Mission

Build a community to educate, empower, and support people fighting sleepiness.

Our Vision

A world where sleepiness is better understood and where everyone feels awake enough to achieve their full potential.

Our Team

michael sparace

Michael Sparace

Board Chair

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. 


Michael Sparace – Board Chair

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.

anjel burgess

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.


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).

Christine Ingrassia

Christine Ingrassia

Board Member

Christine became an advocate for people with sleep disorders after her son began experiencing symptoms that took years, multiple specialists, and extensive research on her own to even hear idiopathic hypersomnia as a possible diagnosis.


Christine Ingrassia – Board Member

Christine became an advocate for people with sleep disorders after her son began experiencing symptoms that took years, multiple specialists, and extensive research on her own to even hear idiopathic hypersomnia as a possible diagnosis. Finding the Hypersomnia Foundation, and the support of the IH community, was a comforting and helpful turning point. Christine helped launch the inaugural Idiopathic Hypersomnia Day in 2024 and leads the Support 4 Supporters group for caregivers of people living with IH. She joined the Foundation’s Board in 2025 to help move the critical mission and vision of the organization forward.

dianna kimmel

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.


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. "

chris leach

Christopher Leach

Board Member

Chris has spent his career focused on the research and development of Corporate internal controls, enterprise risk management and complex project management.  After nearly a decade at Ernst & Young, Chris moved into the biotech industry serving critical care needs in drug development and research.


Christopher Leach – Board Member

Chris has spent his career focused on the research and development of Corporate internal controls, enterprise risk management and complex project management.  After nearly a decade at Ernst & Young Chris moved into the biotech industry serving critical care needs in drug development and research.

Chris earned a Bachelor of Science degree from the University of Evansville and has been passionate about continuing his post degree education at various universities, focusing on managing risk in organizations, internal controls, and Board Room dynamics and reporting.

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.


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.

jennifer mundt

Jennifer Mundt

Board Member

Dr. Jennifer Mundt is a sleep psychologist at the University of Utah and is board certified in behavioral sleep medicine. Her research focuses on developing behavioral interventions for central disorders of hypersomnolence and on investigating the family impact of these disorders.

andrew powell

Andrew Powell, JD

Chief Financial Officer

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.


Andrew Powell, JD – Chief Financial Officer

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.

edward stepanski

Edward Stepanski, PhD

Secretary

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.


Edward Stepanski, PhD – Secretary

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

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.


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

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 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 and 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 8 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/caregiver role have since played a pivotal role advising industry and 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 large-scale public platforms and 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 people living with central disorders of hypersomnolence (CDoH) and related diseases. She serves as Chief Executive Officer.

Lindsay holds a PhD, an EdS, and two MEds from Florida Atlantic University, further qualifications in educational leadership. She is also a Program Coordinator for the World Sleep Society. When out of the office, she enjoys traveling with her family.

evan desmarais

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.


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.

stephanie wells

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.


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.

Top