About The Periodic Paralysis Association
The Periodic Paralysis Association is a Non-profit Charitable Corporation founded to foster awareness of the periodic paralyses, promote science-based information regarding this class of disorder, and champion the interests of the Periodic Paralysis Community.
Statement of Purpose:
To provide convenient access to science-based information to help better understand and manage the periodic paralyses.
To stimulate interaction between the periodic paralysis community and various professional disciplines that may be able to bring light to this complex and often misunderstood collection of disorders.
To promote an increased level of awareness of these disorders, leading to increased research, improved management guidelines, improved diagnostic protocols, and ultimately, their prevention and cure.
To provide a forum for open discussion between patients, caregivers, doctors, medical experts, and the public community.
Board of Directors
Linda Feld is from Connecticut and has a background in elementary education. Since moving to Florida in 1975 Linda has spent much of her time as a volunteer for various organizations. Those include Hospice, Canine Companions for Independence and as an Ombudsman for Elder Affairs in the state of Florida. She has been affiliated with the PPA since 2000 and has served as Secretary, Vice President and now President of the organization. Linda has a Service Dog named Valentine and she is happy to share her experiences with him if anyone is interested. Linda is genetically diagnosed with Normokalemic Periodic Paralysis and spent a great deal of time in Germany with the late Dr. Lehmann-Horn learning much about these disease states and the genetics involved. She has made presentations worldwide about this disease and always looks forward to meeting new patients and helping them on their journey. She is always available to share her journey and embraces our philosophy that “You are not alone”. Linda can be reached for emergency purposes by calling: +1 (407) 339-9499
Teresa Cochran has lived in Orlando, FL almost her entire life. She graduated from the University of Central Florida with a BA in Legal Studies, and has been a Paralegal in the local community since 1993. Teresa has Hypokalemic Periodic Paralysis. She learned at the age of 15 about her disease and over the years has gained knowledge on what her triggers are, and how to manage them along with food and medication. Having a sense of adventure, love of travel and experiencing other cultures, Teresa took her first trip overseas in her early 20s, backpacking through Europe and visiting eight (8) countries in 30 days. If you are from another country she would love to hear what you love about your culture. Teresa joined the PPA board in the hope that she can help anyone else searching for answers to their own symptoms, and that sharing her knowledge and experiences may help others in that search. Teresa is also a member of the local PPA Support Group in Central Florida.
Monica Cramer grew up in Orlando, Fl and has a background in the equestrian industry, animal education and bookkeeping/accounts payable. She returned to school and is working towards her Bachelor of Social Work (BSW). Monica was clinically diagnosed 9 years ago with Hypokalemic Periodic Paralysis. Recently her family became part of a study and Myotonia Congenita has been added to her diagnosis. The PPA has been a key factor for Monica’s diagnosis and treatment. She currently is a member of the local PPA support group here in Central Florida. Monica Cramer serves as Treasurer of the PPA.
Growth Development Director Evelyn Black was born in NJ but spent her formative years in Colombia, SA which she believes has afforded her a unique life perspective and a love for travel. In 1996 she moved to Orlando and has been a resident ever since. She studied at UCF where she obtained a MS degree in Change Management. Since then she has worked in the Human Resources field and is currently the HR manager for a well-established construction company. In addition to her work life, Evelyn has a philanthropic spirit and enjoys volunteering as a mentor for at risk youth and partnering with Habitat for Humanity. After learning about PP, Evelyn was motivated to join the PPA in its mission to generate awareness and to educate both the medical field and the public about PP. She hopes that her small efforts will lead to positive changes in the diagnoses and treatment of PP.
History of the PPA
As has been the case for many rare disorders, the PPA rose out of a group of individuals who found each other over the internet seeking answers about their rare conditions. Among these individuals were Deb Cavel-Greant, Don Anderson, and Patrick Cochran. Deb and Don founded and managed a listserv for those affected with periodic paralysis. Their organization evolved into what is today Periodic Paralysis International.
The Periodic Paralysis News Desk has created a site rich with information for both periodic paralysis patients and their physicians, and it still maintains an independent listserv. Patrick Cochran, motivated by a desire to find a diagnosis for his wife, Kay, as well as by the recognition of the benefits of having an official organization for this group of orphan diseases, had the foresight to incorporate the Periodic Paralysis Association as a California-based 501c3 organization.
The PPA was incorporated on June 27, 1997. The PPA’s mission was to establish a forum in which patients could communicate with each other, gather credible, science-based information, and gain access to the leading experts in the field. Additionally, by creating an official home for these disorders, the PPA hoped to facilitate collaboration between physicians and researchers in this field.