Jesse Torrey is a teacher, writer and mother. Her son, Jack, has ALD and  is 14 years post-transplant.

Kathleen is on our Board of Directors. Her son, John, was diagnosed with adrenal insufficiency and ALD almost 12 years ago.

Janis Sherwood is the Founder of Fight ALD-Fighting Illness Through Education. She has been educating medical professionals across the U.S., lobbying for newborn screening and has been an advocate for ALD families since losing her 8 year old son, Sawyer, to the disease 16 years ago. Now as a symptomatic female she volunteers to moderate ALD Connect Community calls to share her knowledge and experience with the ALD/AMN families.

Ken was diagnosed with AMN at age 31 and lives in central Pennsylvania. He works full time as a CAD draftsman and is highly involved in the rare disease community as a whole. His biggest suggestion is to find your community and ALD Connect allowed him to do that.

Tim lives in Dallas, Texas. He is married and has a son and 2 stepchildren  – who are all adults now. Tim was diagnosed with AMN and Addison’s Disease when he was 18 years old. He started taking hydrocortisone right away for Addison’s, but he remained healthy and symptom-free for over a decade. He started experiencing all the usual AMN symptoms around age 30. Now, he walks with a cane full time and use a scooter around the house and a wheelchair for longer distances in public.

Kathleen is on our Board of Directors. Her son, John, was diagnosed with adrenal insufficiency and ALD almost 12 years ago.

Suzanne Flynn is a graduate of the Connell School of Nursing at Boston College. A pediatric nurse for 20 years, she lives in Crestwood, New York with her husband, Ken and three children—Charlotte, Gavin, and Patrick. Her youngest child, Patrick, was diagnosed with ALD at birth through newborn screening thanks to Aidan’s Law in New York State. Her older son, Gavin, was then tested and was also found to have ALD. Both boys are under the care of Dr. Florian Eichler at Mass General Hospital in Boston. They are asymptomatic and doing very well.

Tara Meady is a nurse practitioner in an OBGYN clinic but her most fulfilling job is being a mom to her two sons. Her youngest son was diagnosed with ALD through NBS in Connecticut and has had adrenal insufficiency issues from early on. He is now 4 and his brother is 6 and tested negative for ALD.

Jesse Torrey is a teacher, writer and mother. Her son, Jack, has ALD and  is 14 years post-transplant.

Jean Cappello moved as a bride of 20 to Santiago, Chile in 1966 where she learned Spanish a la fuerza. She also started her teaching career and had the first of her two children, Juan Pablo and Jesse Anna. Once she and her husband Juan Carlos moved back to the States, they had their son Philip and Jean did graduate work in Spanish getting her Ph.D. from Rutgers in 1993. She taught at Rutgers and then Fordham University.

Jean and Juan had never heard of Adrenoleukodystrophy until their daughter’s 8 year old son Jack was diagnosed in 2007. He had a successful stem cell transplant, and while his life is very complicated, he is thriving. Jean and Jesse both have the ALD mutation and are somewhat symptomatic. Jesse Torrey is very involved with ALD Connect and has spoken at many of their conferences and hosts several of their support calls. Jean continues to host with Verónica de Pablo the support call in Spanish.

Kathleen is on our Board of Directors. Her son, John, was diagnosed with adrenal insufficiency and ALD almost 12 years ago.

Karen lives in the UK and has identical twin sons affected by ALD. They were diagnosed over 20 years ago, sadly one of her sons passed away aged 8 and her other son is now 28 and severely disabled.  She is the Support Services Manager for Alex The Leukodystrophy Charity and supports families affected by ALD and raises awareness of the condition.