Board of Directors

Cheryl Harr grew up in Ohio and lives on a small farm with her husband and son. She enjoys the country life and competing with her registered quarter horses in Western events.

Cheryl’s background is in technical writing and has done volunteer work ranging from opening her home to foreign exchange students, handicapped horseback riding programs, as well as providing horses and lessons to 4H members unable to have a horse project of their own.

Like many with PP, her journey took several twists and turns before getting diagnosed with Hypokalemic Periodic Paralysis. Considering it an honor to be a part of the PPI team, Cheryl wishes to continue expanding documentation resources as well as promote more awareness internationally.

Vivian was born in sunny southern California and appreciates all the teaching universities she has access to give her son the best chance at medical independence. She currently works in the environmental industry with 25 years experience as a database specialist for sites with groundwater/soil contamination.

Vivian has volunteered at multiple non-profits including food banks giving food, baby items and other critical help to service men/women and their families. She spent 15 years mentoring at risk youth, encouraging them on a path to self-awareness, faith and stability. Her current passion is finding health and wellness for her son who has been diagnosed with hypermobile Ehlers-Danlos Syndrome and Hypokalemic Period Paralysis, these two genetic conditions have caused endless complications in his life and it is her goal to help him and others like him to live full and enjoyable lives given their medical complications. She mentors other seriously ill young adults on how to present their conditions to get the most out of doctor appointments where typically they may be dismissed.

She and her son were featured in the two part docuseries: Overcoming two rare diseases: Ehlers-Danlos Syndrome (EDS) & Periodic Paralysis (PP), The Doctors TV show and the book Doctor Dogsby Maria Goodavage.

Sean was raised in Hawaii and lived there through high school before attending Hiram College in Hiram, Ohio, where he earned a Bachelor of Arts in Management. He went on to spend more than 20 years working in accounting for Coca-Cola Enterprises, holding positions in Akron, Ohio; Pittsburgh, Pennsylvania; and Cincinnati, Ohio. In 2015, Sean moved to Oregon to be closer to his parents and sister and to help care for his mother. He currently lives in Madras, Oregon, where he works in government accounting for a local school district.

In addition to his professional accounting career, Sean has extensive experience supporting nonprofit organizations. He currently serves as Treasurer for a 501(c)(3) service dog organization in Oregon and as Financial Secretary and Comptroller for the Knights of Columbus. He has also been active in his church and other charitable organizations over the years, frequently putting his accounting and financial experience to work in support of their missions.

Sean spent more than 20 years serving his community as a volunteer and part-time firefighter and EMT in Ohio, further reflecting his longstanding commitment to service.

Sean’s connection to the periodic paralysis community began through the spouse of his college roommate, who lives with PP. Through that personal connection, Sean became involved with Periodic Paralysis International and now brings his extensive accounting and nonprofit experience, along with his commitment to helping others, to his role as Treasurer.

Rachael hails from cold and snowy Minnesota, where she enjoys growing novel tomato varieties in the summer and trying new coffee shops with her husband.

She holds a bachelor's degree in Environmental Public Health and previously co-founded a health tech company connecting patients with complex chronic illnesses based on symptom profile and treatment response. She was an EPA Greater Research Opportunities (GRO) Undergraduate fellow and received a Patient-Centered Outcomes Research Institute (PCORI) Pipeline to Proposal grant with her startup. Rachael has worked with patient advocacy organizations in professional and volunteer capacities for over a decade, including #MEAction, Solve ME/CFS, the ME/CFS Common Data Elements (clinical/research data standards), Columbia University's ME/CFS patient advisory committee, and the Minnesota Department of Health's Long COVID and post-viral conditions roadmap, and is currently a moderator for the Periodic Paralysis Support Network (PPSN).

Rachael spent 15 years undiagnosed before a genetic counselor suggested that her symptoms sounded neuromuscular, and testing confirmed that she has Hypokalemic Periodic Paralysis.

David was born in Maryland and has made many homes for himself across the US. He currently lives in Oregon, where he plans to stay for the foreseeable future. He enjoys cooking, computer gaming, reading, and spending as much time as possible with his dogs. His background includes Anthropology and he has a Master’s of Public Health in Epidemiology. He focuses his attention on rare, chronic diseases.

In addition to PP, David has a second rare disease, Adult Onset Still’s Disease. Working through decades of misdiagnosis with both PP and AOSD, David is well acquainted with the struggle of finding correct diagnoses and advocating for necessary, life-changing care. He believes that solid education is the key to empowering rare disease patients to take charge of their health.

David feels it is an honor to be asked to work with PPI, and is excited to see how we can improve living with PP for everyone.

Ralph Berthiaume was born and raised in Western Massachusetts where he enjoys spending time with his family. He enjoys live music, sporting events, and cooking for friends and family. His background is in entertainment and hospitality management, and he also spent more than 10 years volunteering as a youth soccer coach.

Ralph was diagnosed with hypokalemic periodic paralysis in 2001. That diagnosis led him to want to learn everything he could about periodic paralysis and connect with others living with the condition. As social media began to grow, he created his first HypoPP group in Yahoo Groups in late 2004 and moved it to Facebook in early 2007, where it remains today as the Periodic Paralysis Support Network(PPSN). The group has grown into the largest and most active social support group for people living with periodic paralysis, with more than 3,700 members from over 84 countries.

Ralph’s commitment to advocacy and awareness has guided his work ever since. “Stronger Together” has long been his motto, and he brings that same dedication to his work with Periodic Paralysis International.