When a family faces a leukodystrophy diagnosis, the journey can feel overwhelming and isolating. That’s where the United Leukodystrophy Foundation (ULF) comes in. Since 1982, ULF has provided families with life-changing information and resources, access to expert care, and a compassionate, connected community that ensures no one must face their leukodystrophy journey alone.

Robert and Nancy’s story that follows is a powerful example of that support in action. Their family’s journey with ALD illustrates the challenges they’ve faced, their resilience, and the role the ULF has played along the way.

“My name is Robert, and my wife Nancy and I have been married for 47 years.  Together, we had three sons: Kevin, Bill, and Steven. In 1989, our oldest son, Kevin, in second grade at the time, began struggling at school with hyperactivity, stumbling, and slipping grades, something that no one could explain.

After our family doctor failed to find answers, Kevin’s school work continued to slip even more, and he began to act out. We were eventually referred to a neurologist in a nearby city that still resulted in no definitive answers.

At our insistence, we were referred to the University of Michigan, where within minutes into our appointment, they recognized what no one else had: Kevin had Adrenoleukodystrophy (ALD), a hereditary, life-threatening disease. Due to it being hereditary, our whole family was tested; and it was revealed that Kevin, our second son Bill, and Nancy were positive.

We were then connected to Dr. Hugo Moser at Kennedy Krieger Institute in Baltimore Maryland, where at the time he led a renowned laboratory for ALD. Nancy and I traveled with Kevin and Bill to Baltimore for in-depth testing, which was Kevin’s only visit due to his rapid decline. Through the amazing team at Kennedy Krieger, we were introduced to the United Leukodystrophy Foundation.

ULF became our lifeline. Nancy and I attended our first Family Conference in 1991 and discovered a wealth of information and the long-lasting relationships with doctors and other families affected by leukodystrophy. It was quite overwhelming and gratifying

Kevin’s condition progressed rapidly, and he passed away at the young age of 10. We continued to attend the ULF conferences in the coming years. Bill graduated from high school, began working full-time, got married and had two boys of his own. Bill stayed asymptomatic as he continued to work and raise his family. Over time he began experiencing health changes that affected his mobility, mood, family life, and work.

In 2019, Nancy and I attended the ULF Conference and Bill joined us, where he connected with others facing similar experiences and forged long-standing friendships and was welcomed into a community that could relate to his personal experiences. After a couple of years, travel became too difficult for Bill, his condition was worsening, and he could no longer join us at the conference. In 2024, Bill passed away at the young age of 40. We immediately reached out to ULF and the community for strength and understanding.

Through our unimaginable journey and its challenges, ULF was there – welcoming, supportive, and unwavering. Nancy and I continue to attend conferences, participate in support calls and webinars, and Nancy plans to become a ULF volunteer Ambassador. We know firsthand the difference ULF makes to the leukodystrophy community. “

This year, as you plan your end-of-year giving, we hope you’ll consider supporting the United Leukodystrophy Foundation. Your gift ensures that families like Robert and Nancy’s can access life-saving information, build lasting connections, and find the courage and support to face the most challenging days.