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The Lambert-Eaton LEMS Family Association was incorporated in the State of Texas, June 14, 2022. The founders, all LEMS patients, and patient advocates are Julianna Kustelski of Denver Colorado, Price Wooldridge of Fort Worth, Texas, and Kristina Patafio of Staten Island, New York.
Julianna Kustelski was born and raised in San Antonio, Texas. She is the fifth of nine children. Her career prior to LEMS included various roles as an Administrative and Executive Assistant.
Since being diagnosed with LEMS she has been a patient advocate. At the MDA she served on the Task Force for Public Awareness. She is currently Administrator for the largest LEMS FB Group online since it’s inception. This platform has over 1,500 group members worldwide with its goal to unite, inform, and raise awareness for LEMS.
She served as Resident Council President at the nursing home where she spent eight years.
She became further involved with patient advocacy and worked on the Human Rights Charter for the Americans with Disabilities Act which was signed into law and two state laws regarding patients rights for nursing home residents.
She has worked with legislators, medical professionals, organizations, government institutions and the public.
Her passion is advocating for LEMS patients. She is a Benedictine Oblate and a trained yoga instructor. Her hobbies are arts and crafts, playing cards and beading. She resides in Denver, Colorado, with her feline companion Punkin.
She was diagnosed with LEMS in 1993.
Price is a born and bred Texan from Austin. After high school he attended Southern Methodist University in Dallas and served in the U.S. Air Force as a Staff Sergeant during the VietnamWar.
After graduating from the University of Texas in Austin, Price embarked on a 30 year career in television broadcast production. He is three times Emmy nominated, and an Emmy winner as a Production Manager. The documentary he produced and directed for PBS, “The Oklahoma I Remember”, is also an Emmy winning production.
Price also holds an Associates Degree in Applied Science, Respiratory Therapy, and is a Registered Respiratory Therapist.
Price is a dedicated LEMS patient and rare disease advocate, working as a Forum Moderator on the BioNews, Lambert-Eaton News forums. He also records audio tracks for podcasts for BioNews, serving the Multiple Sclerosis community.
He was diagnosed with LEMS in 2017.
Kristina was born in raised in Staten Island, NY, a suburb outside of Manhattan. She still lives there with her husband of 27 years and her 24 year old son.
After graduating High School she went right to work in Manhattan, starting her Wall Street career. Kristina has worked in many capacities climbing the ladder. She was a licensed broker assisting owners of companies and a client liaison for many top producing brokers for 25 years.
Later, looking for a career closer to home, she became a Real Estate Salesperson assisting buyers and sellers with their real estate needs.
She enjoys Broadway shows, cooking, baking, spending time with family, the beach, and bike riding.
Kristina was diagnosed with LEMS in September, 2017.
Desiree was born and raised in the South Texas border town of Brownsville. She continues to reside there with her wonderful husband, 4 children (ages 10-22), and 2 rescue pups (Dudley and Opi).
After graduating from the University of Texas in Brownsville, Desiree served as a Registered Nurse for 15 years in the hospital, home health, and Community Based Alternatives settings. In 2015 she enrolled at the University of Texas in Arlington and attained a Bachelor’s of Science in Nursing degree. Determined to go further, she was accepted into the Graduate program of Nursing at Simmons in Boston, Massachusetts. In 2017, she became a Certified Family Nurse Practitioner. Since graduation, she has provided healthcare at a very busy internal medicine practice alongside a well established sought after Internist.
She has a passion for serving God through her practice as a healthcare provider. Since being diagnosed with LEMS, she has learned to let go of control and roll with the punches. She enjoys quality time at home with her family with some light travel over long weekends.
Desiree was diagnosed with LEMS in June of 2021.