Primary Periodic Paralysis is a group of disorders whereby patients become temporarily paralyzed due to triggers such as rest after exercise or certain foods.

The Periodic Paralysis Association is on a mission to foster awareness of the periodic paralysis, promote science-based information regarding this class of disorder, and champion the interests of the Periodic Paralysis Community.

You are not alone.

SEPT 2-3 ♦ ORLANDO, FL

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A Rare Adventure

A series that highlights what it’s like living with Periodic Paralysis; including interviews with people just like you, how they get through their day, just living the adventure… day-to-day with this rare disease.

You’re Not Alone

This series is aimed at those who are undiagnosed or still searching for answers to their symptoms. These videos include a plethora of real-world knowledge and insight on topics such as: why can’t I move my muscles, the high probability of being misdiagnosed, people even believing you have a disease, support systems, and much, much more.

Ask the Expert

A series that features leading Neurologist and Muscle Physiologist Dr. Steven Cannon directly answering your questions from our website, Facebook, Instagram, and even on our Youtube channel. Whether you are new to PP, undiagnosed, or diagnosed for a long time; we all have questions. And sometimes the answers are hard to find. So, ask us! 

HELP US DISCOVER ANSWERS WE ARE ALL SEEKING.

Your contribution helps fund ongoing Periodic Paralysis research and the discovery of new mutations and possible new treatments.

Meet Our Volunteer
Board Members

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.

Heidi Ditri

Treasurer

Heidi Ditri grew up and resides in Michigan. She received a Bachelor’s 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.

Teresea Cochran

Secretary

Teresa Cochran has lived in Orlando, FL almost her entire life. 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.

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. Evelyn has a philanthropic spirit and enjoys volunteering as a mentor for at-risk youth and partnering with Habitat for Humanity.

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.

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.

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.

Jared Harr

Media Specialist

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.

Contact Us
We are here to help.

OCT 30-31 ♦ ORLANDO, FL

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Partners

The PPA believes in the power of connection. We work with partners in the patient community and medical industry who share the same goal of researching, identifying, treating, and curing Periodic Paralysis.

Teresea Cochran

Secretary

Teresa Cochran has lived in Orlando, FL almost her entire life. 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.

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. Evelyn has a philanthropic spirit and enjoys volunteering as a mentor for at-risk youth and partnering with Habitat for Humanity.

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.

Monca Cramer

Treasurer

Monica Cramer grew up in Orlando, Florida and has a background in the equestrian industry, animal education, and bookkeeping. 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.

Cienna Ditri

Vice President

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.

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.