Board of Directors
Meet our passionate volunteer board members who lead PPI’s efforts to serve patients and their caretakers. They understand the difficulties associated with diagnosis and coping with this rare disease as they themselves are impacted.
Linda is always willing to talk to patients to help them on their diagnostic journey and is thrilled to be part of the PPI team as her friendship with its founder, Deb Greant has always remained strong!
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.
Leslie is an award-winning nature photographer, who has been passionate about education and awareness of rare diseases for over 10 years. A friend once told her “ Your pain will have a purpose.” She has taken that to heart and has made it her life’s mission to help others along their diagnostic journey.
It was during an extended trip to another country ten years ago that Laura had an onset of symptoms and her diagnostic odyssey began. It was during this frustrating and emotional search for a diagnosis that she became aware of the PPA and Linda Feld where she found a sense of direction and support. In 2019, Laura was clinically diagnosed with Hypokalemic Periodic Paralysis based on symptoms, a genetic VUS and response to treatment.
During her many hours on the internet searching for answers; Laura became aware of Rare Disease Legislative Advocacy and became committed to supporting the advocacy of rare disease patients and organizations in order to amplify concerns on a local, state and federal policy making level.
Laura has a diverse background in governmental licensing, certifications, investigations and human resource management. She enjoys the relationships she has cultivated over the years through non-profit and service organizations; most recently developing a Philanthropy and Scholarship program for her Women’s Sailing Assn. in order to introduce young women and at risk girls to sailing.
As Secretary of PPI, Laura will actively scribe at board meetings and ensure PPI is compliant with 501(c)(3) documentation requirements.
Shelley’s symptoms started at age 31, and she was fortunate to be diagnosed at 32 by a family doctor who had recalled a lecture on periodic paralysis while in medical school. She has hypokalemic PP, but her potassium levels remain in the normal range during intermittent paralysis and myoclonus. “My first contact with someone who also had periodic paralysis was when I received an email response from Deb Greant. I cried as I was so happy to no longer feel alone and lost after my diagnosis.
Shelley has been involved in the PP community since joining the PPI and the PPA in 1999 - having attended the very first PPA conference and nearly every conference since. She was a board member of, and served as treasurer of the PPA for 12 years.
While working as a Nurse, Jamie became passionate about advocating for patient care and for fellow healthcare workers, ultimately leading to her election as a Chief Union Steward.
After a long diagnostic journey and the unfortunate loss of her brother who suffered from the same condition, Jamie was diagnosed with Andersen-Tawil (Hypo) syndrome.
Now that Jamie is retired, she spends her free time spreading awareness about all forms of PP, educating others of their healthcare rights, and creating positive partnerships with healthcare providers to advance the treatment of this rare group of diseases.