We are Bob and Yvonne Rauner. We are the parents of our two sons, Kevin and Paul, who had adrenoleukodystrophy and adrenomyeloneuropathy. Our story began with all the same challenges ALD families faced at the time. We navigated a three-year diagnostic odyssey with Kevin. He was “diagnosed” with ADHD and treated for it but yet he was still getting worse. It took almost three years before our pediatrician finally decided that there may be something else going on. We were eventually sent to the University of Iowa Children’s Hospital, where after two days of testing, we were given the diagnosis of ALD.
We didn’t know anyone else with this diagnosis and felt completely devastated. All we were told was that there was an organization called the United Leukodystrophy Foundation where we could learn more about ALD. , It was the only source of information available at the time. When we called, we ended up spending two hours on the phone with the family running the foundation; and it was a lifeline for us.
That same year we attended our first ULF Family Conference. There, we found support, lifelong friendships, and developed relationships with researchers, including Dr. Hugo Moser who was the main researcher in the field and gave us hope for the future. The conference remains one of the greatest gifts the ULF offers, connecting families and medical professionals who understand what it means to walk this road.
After we were diagnosed with ALD, we had many friends gather around us and help us support the work of the ULF. For over 30 years, we have supported the ULF because we have seen its profound impact firsthand. From connecting to education and research funding, the ULF transforms lives. It is why we joined the board, and why Bob dedicated a decade as its President, ensuring the foundation’s mission continues to serve families like ours. Even now after our retirement from the board, we continue to support the work of the ULF and encourage others to join us in supporting those affected by leukodystrophy.
We invite you to stand with us. Your support, whether through a donation, volunteering your time and talents, ensures the ULF can continue to bring hope to families navigating a leukodystrophy diagnosis.
Thank you for being part of this community. When we work together, we are not alone.