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
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’s clinical diagnosis of Hypokalemic Periodic Paralysis (from 2010) recently changed to Hyperkalemic Periodic Paralysis/Paramyotonia Congenita after the research, of her family’s genetic findings, was complete by Dr. Cannon. Both of her adult children have also been genetically diagnosed with HyperPP/PMC. The PPA has been a key factor for Monica receiving the correct diagnosis, treatment and has allowed her to return to riding competitively. Her goal as President is to continue the hard work and dedication the PPA has provided in the service of helping those with PPP to find answers and treatments.
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.
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.
Mason Alley grew up in Tampa, FL. He studied Studio Art and African History at Washington and Lee University in Virginia, worked in the entertainment industry in Los Angeles, CA as a writer / producer, and currently leads a strategic growth consultancy in Gainesville, FL helping organizations adopt strategy, operations, and cultural frameworks from the technology sector to accelerate their innovation and increase their valuation. In addition to his work with the PPA, Mason has previously served as president of Leadership Gainesville Alumni Association and is a co-founder and board member of the Florida Leadership Center. Mason's mother was clinically diagnosed with Hypokalemic Periodic Paralysis and Congenital Myasthenic Syndrome in 2013. Mason joined the PPA board in 2021 and serves as an at-large member.
Dennis is a 4th generation Hypokalemic Periodic Paralysis patient and businessman from Longview, Texas. He has been able to find a balance between his 41 year marriage, family of 8 children, career, diet and exercise. Incredibly, none of his children exhibit any symptoms of PP. Dennis has dedicated himself to charitable causes and is involved locally with his church, a homeless shelter and other outreach activities. From his first full body paralytic attack at 14 years old, Dennis made it his goal to stay physically fit, and fast sugars/carbs whenever they posed a problem. This served him well. At 62, Dennis rides a bicycle around the Lake Cherokee area about 2500 miles per year. As a patient advocate, Dennis has the experience to connect PP patients to their best potential for a good life as he encourages them along the way.
Cienna grew up in Michigan and is a skilled communicator, passionate advocate and compassionate community leader in the broader healthcare space. Cienna enjoys modeling and has built a strong social media presence, using her platform to raise awareness for chronic conditions, disability, and build representation of disability in fashion.
She is passionate about turning clicks into real life actions, and through her platform, she has catalyzed movements that give a voice to people with disabilities and chronic conditions. Cienna works in the fashion space to rebrand adaptive fashion and to build disability representation and diversity. Cienna was clinically diagnosed with hypokalemic periodic paralysis 4 years ago, but has been living with it most of her life. She credits the Periodic Paralysis Association and their wealth of resources for helping her manage her condition.
Christine was born in New Jersey and moved to Central Florida when she was seven years old. Christine has a bachelor’s degree in Business Management and Marketing from Florida Metropolitan University, and she has completed some work towards a MBA in Business Management. Eleven years ago, Christine moved to Atlanta, GA. Christine has spent more than twenty-five years working in the IT / ERP Consulting industry in sales and recruiting. Recently, Christine started a Healthcare IT Consulting firm. In the past, Christine has been involved in nonprofit fund raising for two nonprofits as well as being a Board Member and Board President.
Christine’s episodes of paralysis started when she was an adolescent, but she wasn’t diagnosed with Hypokalemic Periodic Paralysis until nine years ago. Recently, her clinical diagnosis was changed to Hyperkalemic Periodic Paralysis and Myotonia Congenita was added to the diagnosis. Christine became involved in the PPA to assist in the efforts of expanding Patient Advocacy and Physician Education.
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.