Board of Directors

Diane Powell – CEO/Chair

In 2014, an alert physician diagnosed one of Diane’s family members with idiopathic hypersomnia. Soon afterwards, Diane learned about the Hypersomnia Foundation and is proud to develop and support its mission of raising awareness and advocating for increased research and development of new treatments.

As a Licensed Clinical Social Worker, Diane has provided psychotherapy for clients struggling with anxiety, depression, bipolar illness and many other mental health diagnoses. Her community projects have included leading a task force on alcohol abuse among expat teens in Singapore and founding a bereavement support group for young widows and widowers in Florida. Through a program of the Episcopal Church, she helped lead the launch of community projects in Guatemala among Mayan populations devastated by years of civil war.

Diane is also a founding member of Maverick Collective, a women’s philanthropy group, formed by Population Services International, Inc. in partnership with the Gates Foundation to improve the health outcomes of women and girls across the world. She has collaborated on a pilot project to provide mobile medical units in the marketplaces of rural villages of southern Senegal, to help reduce maternal and infant mortality, and supported a social franchise model of women’s clinics in Honduras.

Diane is president and co-founder of The Robertson Powell Foundation, supporting research and innovation in the field of health.

Catherine (Cat) Page-Rye – CFO/Treasurer

Cat graduated from the University of Illinois-Chicago and in 1979 founded Clerks on the Run, a company servicing Chicago area attorneys. In 1984, she married David Rye, a medical student who was completing his MD and PhD degrees at the University of Chicago, and she is now a mother to their three adult children.

After selling her interest in Clerks on the Run, Cat and her brother started Page Builders, Inc, a Chicago North Shore custom residential construction company that, between the years 1984 and 2007, grew in size and success. In 1992, David accepted a faculty position at Emory University, and the family moved to Atlanta, Georgia, with Cat commuting to her business in Chicago.

In 2005 she established Charles Page Builders, LLC, as a new entity focused upon high-end remodel work on Chicago’s North Shore. In her role as president of both companies, Cat was responsible for bidding all projects, preparing and communicating proposals and change orders to clients, interviewing subcontractors, negotiating and awarding contracts, negotiating insurance, applying for permits, and supervising office staff and job site superintendents.

After retiring from her companies, Cat embraced volunteerism as a new passion in her life. She was chairperson of the stewardship committee of Atlanta Unity Church from 2011-2014, was an executive board member, and currently sings in their choir. She has been an active volunteer and cofounder of the Hypersomnia Foundation and is committed to increasing awareness and advocating for proper diagnosis and successful treatment for every person living with idiopathic hypersomnia and related disorders.

Betsy Ashcraft

Elizabeth (Betsy) Ashcraft – Secretary

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.

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Sarah Beazley

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. Currently, Sarah owns and runs a horse-boarding farm. 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.

Amy (Haraden) Desmarais

Amy Desmarais is a long-time supporter of and volunteer for the Hypersomnia Foundation. Prior to being elected to the Board, she was one of the founders of the PAAC (a Board Advisory Council) and volunteered on the Council since its inception in late 2015. Amy is currently employed as a SEO Analyst at TripAdvisor, and she is a graduate of Stonehill College (BSBA) and Northeastern University (MSA). Amy is passionate about raising awareness and advocating for people with hypersomnia.

Michelle A. Emrich, MD

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) 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.

Mary A. King, EdD

 

Mary joined the Board of Directors in 2015, after volunteering her services the previous year. She is passionate about the mission of the Foundation and its on-going commitment to developing a resilient community for those affected by the diagnosis of idiopathic hypersomnia. Mary oversees the Foundation’s Education Essentials for Students with IH guides for the K-12 and higher education programs. She is the mother of a young adult diagnosed with idiopathic hypersomnia.

Professionally, Mary is Professor Emerita, Fitchburg State University, where she held graduate and undergraduate appointments in the Behavioral Sciences and administrative responsibilities. A psychologist and educator by training, she has experience as a K-12 classroom teacher with certification in special education and as a probation officer for juveniles (MA). She holds clinical licenses and is a member of the American Psychological Association and the Society for Behavioral Sleep Medicine.

Mary has served on community boards and as an officer on regional and national boards in higher education, including the National Society for Experiential Education. She currently serves on the University Advisory Group of United Planet, consults to academic institutions for faculty development, and actively presents at national and international conferences and publishes in the field of experiential learning.

She and her husband, Peter, live in the Boston area and love northeast weather, especially the winters!

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Rebecca King

Rebecca started out as a U.S. Army officer, managed insurance businesses at GE and Progressive Auto Insurance, then spent a decade starting up and running her own small business. She was forced to shut down that business when she was diagnosed with idiopathic hypersomnia. After further tests, the diagnosis was changed to narcolepsy type 2. Having learned that there are many people somewhere on the “spectrum” between IH and narcolepsy type 2, Rebecca chose to volunteer for the Hypersomnia Foundation with their strong commitment to working closely with narcolepsy and KLS communities.

Having worked with state and local governments in the past to develop policy and pass legislation, Rebecca has a keen interest in legislative advocacy on behalf of the IH and sleep disorders community. One of her areas of focus is building relationships between the Hypersomnia Foundation, government entities such as the NIH and FDA, and rare disease organizations focused on public policy such as NORD and the Everylife Foundation. She also works to build and support our federal and state advocacy agenda focused on two critical patient priorities, 1) research to discover effective, FDA-approved therapies and 2) prescription drug access and affordability.

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Lisa D. Laribee, MA

Lisa has worked in the fund raising field for nearly 20 years. This work has been complimented by focused work in the area of grants related to a variety of health care fields as well as neurosurgical and psychiatric genetic research, education and libraries, underserved populations, and population health. With experience in the areas of annual giving, capital campaigns, grateful patient initiatives, donor stewardship and recognition, and grants, she has contributed her professional know-how to local community fund-raising endeavors, community health and well-being initiatives, and health care philanthropic development activities.

Currently, Lisa is the Manager of Grants and Foundation Relations for St. Joseph’s Health Foundation in Syracuse, New York coordinating all grant activities from researching granting entities and assisting in program development to preparing/submitting grant applications and administering grant awards. Lisa lent her grant writing, research and data management skills to positions in both the Department of Neurosurgery and the Psychiatric Genetics Center at the University of Texas Health Science Center at San Antonio, Texas. She has also worked as adjunct faculty at Northwest Vista College. Prior to her work in education, research and development, Lisa was co-owner of a family owned business for nearly 20 years. She holds a Master of Arts in sociology (emphasis in sociological practice) and a Bachelor of Arts in Human Science from Our Lady of the Lake University in San Antonio.

Lisa has volunteered her time over the years to projects near and dear to her family, including for the Girl Scouts of the USA, the Boy Scouts of America, Order of the Eastern Star, heart disease, breast cancer and the Alzheimer’s Association. She is committed to working on projects that make a difference to those in need and, as such, is excited to lend her time and talent to the Hypersomnia Foundation in a way that helps raise funds for and increase awareness of idiopathic hypersomnia and related sleep disorders.

Andrew Powell

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.

Stephanie Wells – Executive Director

Stephanie Wells 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. She is eager to raise funds for the Hypersomnia Foundation and increase global awareness of idiopathic hypersomnia and related sleep disorders.

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