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
Cienna Ditri
President
Cienna Ditri is a model, influencer, speaker, and consultant. She has consulted for some of the biggest household name brands including Victoria’s Secret, JCPenney, and J Crew to create disability inclusion and accessible products. Creating change in the media and our society as a disability rights activist is one of Cienna’s biggest passions. When she isn’t at the doctors or busy with work, you can find Cienna spending time with her service dogs, trying out new recipes to share with her friends and family, surfing, traveling, reading, and of course, shopping.
Cienna was diagnosed with clinical hypokalemic periodic paralysis about 6 years ago, but has been living with it most of her life. With the Periodic Paralysis Association’s help she learned that she actually has secondary periodic paralysis. Cienna credits the Periodic Paralysis Association and their wealth of resources for helping her manage and live with periodic paralysis. Her goal as President is to continue the hard work and dedication the Periodic Paralysis Association provides in the service of helping those with periodic paralysis to find answers, treatments, and a better quality of life.
Holly Benson
Vice President
Holly Benson grew up in Michigan and now lives in Maine. She has a Bachelor’s degree in Communication and works in finance. Holly was a competitive archer training for the Olympics where she had the opportunity to be involved with several adaptive sports programs such as Wounded Warrior Project, Stand Up for Epilepsy, and various programs making sports accessible and inclusive. When her own competitive archery career took a detour due to health issues, she became a service dog handler, and advocate for invisible illnesses and disabilities. She's worked with USA archery to help create their service dog policy as well as serving on their Ethics committee. Holly first heard about the Periodic Paralysis Association and its mission through a friend impacted by the diagnosis. Her goal is to help continue to amplify the PPA’s message and help stimulate conversation between the periodic paralysis community and professional disciplines.
Heidi Ditri
Treasurer
Heidi Ditri grew up and resides in Michigan. She received a Bachelor’s of Science Degree with a fashion merchandising and marketing minor from Eastern Michigan University. She has built a career in fashion management, interior design, and tax preparation. Heidi loves to spend time with her family boating, traveling, cooking, and of course shopping.
Heidi’s daughter Cienna was diagnosed with hypokalemic periodic paralysis. With the Periodic Paralysis Association’s help, Cienna was correctly diagnosed with secondary periodic paralysis. Heidi is currently in the process of finding out if she may also have secondary periodic paralysis.
Mason Alley
Strategic Planning
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.
Paul Willis
Patient Advocacy
Paul Willis is a born and raised Californian. He also claims he is a winner of the genetic lottery, inheriting Elhers-Danlos Syndrome from his mothers side and HKPP from his fathers side. Diagnosed with HKPP at 21. He is now trying to be and advocate for and hoping to give back to the PP community. In the past Paul has operated his own jewelry making business and gone on mission trips with his church along with other community service projects with the church other local organizations.
Michelle Knoll
Board Member
Michelle Knoll completed her Special Education bachelor degrees in Learning Disabilities and Emotional Impairments (K-12) at Hope College in Holland, Michigan. She completed her Masters in Early Childhood Education at Western Michigan University. Michelle has been a Special Education Teacher for 10 years, working as a resource room teacher with students in K-2 grade, an Early Childhood Special Education teacher, and is now as a Teacher Consultant supporting preschool students with IEPs in inclusive settings. She is passionate about advocacy and inclusivity in the classroom and is excited to bring that energy to support the periodic paralysis community.
Ashton McGrady
Board Member
Ashton is a Charlotte-based content creator sharing beauty, fashion, and lifestyle content through the lens of someone living with a disability. She is especially passionate about accessibility in the beauty space and loves spotlighting inclusive products and creative ways to make your routine work for you. Ashton was diagnosed with Gitelman’s syndrome at 10 years old and has secondary hypokalemic periodic paralysis in addition to Ehlers-Danlos syndrome, POTS, and syringomyelia. Alongside her creator work, Ashton is the co-founder and an accessibility consultant at Wishing Well Collective, where she partners with brands to build more inclusive beauty and fashion experiences. She is a Disney Creators Lab 3.0 alum and AFSP Lifesaver Ambassador, with brand collaborations spanning Naked Sundays, Big Fig Mattress, Nuuly, Anthropologie, VEGAMOUR, and Tilt Beauty. With her service dog, Forest, by her side, she’s passionate about making beauty and fashion more inclusive, accessible, and joyful for everyone.
Jared Harr
Board Member
Jared Harr is a highly skilled creative individual with a remarkable story. Diagnosed with HypoK-PP at the age of nine, Jared has faced additional challenges after beingdiagnosed with Crohn's disease in early 2023. Despite these health obstacles, Jared enjoys a plethora of creative pursuits such as writing, graphic design, voice acting, content creation, anything where he can tell a story.
Jared manages multiple YouTube channels, including a video podcast for a local church, serving as a testament to the potential within individuals diagnosed with PP. Jared’s personal mission extends beyond raising awareness. He strives to offer people a genuine insight into the day-to-day realities of living with Periodic Paralysis.
Tyler Nelson
Board Member
We are excited to welcome Tyler Nelson to the board. Full Bio coming soon
Dennis W LaMaster
Patient Advocacy and Planning
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.
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.
Board of Directors
Monica Cramer
President
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.
Cienna Ditri
Vice President
Cienna Ditri is a model, influencer, speaker, and consultant. She has consulted for some of the biggest household name brands including Victoria’s Secret, JCPenney, and J Crew to create disability inclusion and accessible products. Creating change in the media and our society as a disability rights activist is one of Cienna’s biggest passions. When she isn’t at the doctors or busy with work, you can find Cienna spending time with her service dogs, trying out new recipes to share with her friends and family, surfing, traveling, reading, and of course, shopping.
Cienna was diagnosed with clinical hypokalemic periodic paralysis about 6 years ago, but has been living with it most of her life. With the Periodic Paralysis Association’s help she learned that she actually has secondary periodic paralysis. Cienna credits the Periodic Paralysis Association and their wealth of resources for helping her manage and live with periodic paralysis. Her goal as President is to continue the hard work and dedication the Periodic Paralysis Association provides in the service of helping those with periodic paralysis to find answers, treatments, and a better quality of life.
Christine Conrado – Staskiewicz
Growth Development Director and Interim Treasurer
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.
Michelle Knoll
Board Member
Michelle Knoll completed her Special Education bachelor degrees in Learning Disabilities and Emotional Impairments (K-12) at Hope College in Holland, Michigan. She completed her Masters in Early Childhood Education at Western Michigan University. Michelle has been a Special Education Teacher for 10 years, working as a resource room teacher with students in K-2 grade, an Early Childhood Special Education teacher, and is now as a Teacher Consultant supporting preschool students with IEPs in inclusive settings. She is passionate about advocacy and inclusivity in the classroom and is excited to bring that energy to support the periodic paralysis community.
Evelyn Black
Donor Relations and Fundraising
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
Strategic Planning
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 W LaMaster
Patient Advocacy and Planning
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.