My name is Margaret Halter. My husband, John, was diagnosed with Adrenoleukodystrophy (ALD)/Adrenomyeloneuropathy (AMN) in 1989 at the age of 31. We’ve been married for 41 years, live on a beautiful farm in Ohio, and have two children, a daughter and a son, both with families of their own. Our daughter is a carrier with no current symptoms, and her youngest son was identified through newborn screening. Our son is unaffected by ALD, as this is an X-linked condition. He has three children of his own.
John’s journey with ALD has been incredibly challenging, but his strength and determination inspire me daily. His mobility issues first appeared at age 28 and initial diagnosis was Multiple Sclerosis based only on John’s walking (MRI’s were negative). In the 1980s, with no internet to guide us, I turned to medical libraries and built relationships with specialists.
John’s brother died in 1978 at age 13. The cause of death was ruled as Addison-Schilder disease; a term that was used in the early 20th century to describe a group of conditions that are now known as Adrenoleukodystrophy (ALD). John’s brother was the first case in Cleveland, Ohio (University Hospital). I looked up the pediatric neurologist that treated his brother, and was told by him that this is a childhood disease; and John could not possibly have the same diagnosis. This eventually led us to the Kennedy Krieger Institute, where we confirmed John’s diagnosis with the help of Dr. Hugo Moser. This was a turning point in our lives. At the time, we had two young children and faced overwhelming emotion when told to get “our affairs in order.”
I discovered the ULF in 1990 while searching for resources, just as the movie Lorenzo’s Oil was raising awareness about ALD. Attending the ULF conference that year changed everything. Meeting others on this journey gave us hope, direction, and a sense of community. Over the years, John and I have attended almost every conference, finding strength in the connections we’ve made and the knowledge we’ve gained. Today, he uses a specialized wheelchair and relies on modified equipment to maintain his independence. Despite these changes, John remains resilient and determined.
Giving back to the ULF has been a cornerstone of our lives. Through our time, donations, and connecting with other families, we’ve built lasting friendships and have been inspired by the dedication of physicians and researchers who care deeply about this community.
Now we are focused on supporting our youngest grandson, who is just beginning his own journey with ALD. Our hope is that through early diagnosis and advancing treatments, his future will be brighter. For John and me, staying engaged with the ULF and giving back is how we honor this journey and help others navigating similar paths.