David Burley – Board Chair/CEO
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.
Elizabeth (Betsy) Ashcraft, JD – Board Member
Betsy is an attorney who practiced law for over 20 years in California, Washington, D.C, and Hong Kong, specializing in securities and corporate litigation, and capital markets. Following graduation from Harvard Law School, she worked for the U.S. Securities and Exchange Commission, then later became a partner at the Washington, D.C. office of Kirkland & Ellis. After leaving K&E, she taught at the law school of George Mason University in Virginia, and then worked for Bank of America and Mees Pierson/Fortis in Hong Kong. She is licensed to practice law in California, Washington, D.C., Kentucky and Texas.
Since retiring from law practice, she has volunteered at a variety of non-profit organizations, including arts groups, educational organizations, religious bodies, and animal rescue groups. In 2014, one of her adult sons was diagnosed with idiopathic hypersomnia, thus triggering her interest in the mission of the Hypersomnia Foundation and the research being conducted in the hypersomnia field.
Sarah Beazley, RN – Board Member
Sarah grew up and was educated in the UK, as a pediatric nurse, moving to the USA in 1989 with her husband. She has worked as an RN in various Pediatric and Neonatal Intensive cares in Georgia and California and is currently working as a school nurse in Georgia. Over the years she has enjoyed being involved in many facets of volunteering and fundraising for various organizations.
Having raised three children and with the youngest in college, she felt it was time to return to volunteering. After being introduced to the Hypersomnia Foundation and learning about its mission, she believed her background in nursing could aid in helping the foundation meet its goals, through advocating for those with idiopathic hypersomnia and related disorders and educating the public and health care providers on these topics.
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).
Michelle A. Emrich, MD – Board Member
Michelle is a physician whose love of medicine began in a medical anthropology course at Rice University. With her career interests cemented during her undergraduate education, she headed to The Ohio State University to earn an MD. Discovering her enjoyment of longitudinal comprehensive patient care, Michelle quickly realized she was a born Internist. After completing her Internal Medicine residency at Emory University, she joined a small legacy private practice, managing care for a patient group that included families who had entrusted their healthcare to the practice for over 30 years.
Unfortunately, just 4 short years later, a diagnosis of severe idiopathic hypersomnia (IH)/narcolepsy type 2 forced Michelle to sacrifice her cherished career. Having never heard of IH during her medical training, she was further disillusioned by the scarcity of relevant research and accessible information. Realizing that more needed to be done, Michelle became passionate about increasing awareness of primary hypersomnias not only among medical professionals, but also within the general public. She fervently hopes that increased awareness will lead to more research and eventually a treatment option that will allow her to return to her beloved career. Meanwhile, Michelle is honored to serve the Hypersomnia Foundation.
Watch Michelle's video about living with IH HERE.
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.
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.
Chip Wernig – Board Member
Chip has been a business owner in the field of industrial distribution for over forty years. After successfully selling his company to a private equity firm, he and his son purchased a farm and multiple greenhouses in Palisade, Colorado where they grow industrial hemp for processing into CBD oil. Chip also chairs a nonprofit in Denver that supports the community through service projects and provides video production and website support for other nonprofits.
Chip and his wife of fifty years are deeply passionate about sleep disorders. Their older daughter was diagnosed thirty years ago, at the age of 12, with narcolepsy type 1 and then later with epilepsy. Although unable to work full time, she is active in the narcolepsy community, leading a narcolepsy and IH support group and providing support to newly diagnosed individuals. Their younger daughter was diagnosed with idiopathic hypersomnia as a child, and although she struggled with her sleep disorder throughout most of her high school and college years, she is now a full-time sign language interpreter.
“We are parents who have witnessed our two daughters struggle in life, not only as children, but now as adults,” Chip shared. “We are committed to support research efforts for finding a cure and to raise awareness so others will not feel isolated in their situations.”
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).
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.
Andrew Powell, JD – Industry Outreach 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 Chairman of the Board of Landec, Inc., a public diversified health and wellness company. He also serves on the boards of NASDAQ-listed biotechnology companies Aclaris, Inc., Synthorx Inc. 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.
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.”