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Network for families: DeKalb-based United Leukodystrophy Foundation celebrates 35 years

Two-year-old Clark Cutler of Malta, pictured practicing walking with his mother, Jen, and father, Jason, has been diagnosed with Pelizaeus-Merzbacher disease, a type of leukodystrophy. Because of his young age, it is unknown whether Clark will be able to walk or talk, but his family travels with him to Indiana and Chicago to see doctors and specialists and he attends physical, occupational and speech therapies. He also attends hippotherapy, or therapy on horseback, at Heightened Potential Co. in Kirkland.
Two-year-old Clark Cutler of Malta, pictured practicing walking with his mother, Jen, and father, Jason, has been diagnosed with Pelizaeus-Merzbacher disease, a type of leukodystrophy. Because of his young age, it is unknown whether Clark will be able to walk or talk, but his family travels with him to Indiana and Chicago to see doctors and specialists and he attends physical, occupational and speech therapies. He also attends hippotherapy, or therapy on horseback, at Heightened Potential Co. in Kirkland.

Two-year-old Clark Cutler of Malta is just like other toddlers his age. He loves to watch videos on YouTube, laughs at “The Itsy Bitsy Spider” and likes to throw his food.

Cutler was born with a duplication of the PLP1 gene on the X chromosome and at 3 months old, he was diagnosed with Pelizaeus-Merzbacher disease, a type of leukodystrophy. Typically, leukodsytrophies are genetically inherited. Clark’s case is unusual because it is thought to be caused by a spontaneous mutation.

Leukodystrophies are a group of rare, genetic diseases that affect the white matter of the brain. The word leukodystrophy comes from “leuko,” which means white, and “dystrophy,’ which means imperfect growth.

The 52 types of leukodystrophies affect the central nervous system by disrupting the growth or maintenance of the myelin sheath, which insulates nerve cells. Symptoms vary because of the differences in the genetic cause, but can affect the brain, spinal cord and the peripheral nerves. Leukodystrophies are progressive, meaning that they tend to worsen over the life of the patient, leading to muscle and organ failure and eventually death.

There is no definite cure for leukodystrophy, but promising results have been found by using gene therapy, bone marrow transplants, and Lorenzo’s Oil, which have been shown to halt the disease’s progress in some patients. All other therapies, such as using physical therapy to treat issues with walking, are supportive and focus on quality of life for the individual but do not treat the disease itself.

Clark’s parents, Jen and Jason, said they had never heard of leukodystrophy before a doctor diagnosed their son. Because of his young age, it is unknown whether Clark will be able to walk or talk, but his family travels with him to Indiana and Chicago to see doctors and specialists and he attends physical, occupational and speech therapies. He also attends hippotherapy, or therapy on horseback, at Heightened Potential Co. in Kirkland.

“We are one of 20 families in the United States with a child with that strain of leukodystrophy, so it’s very rare,” Jen Cutler said. “We do therapy as often as we can so that he will be as functional as possible and to support his mobility and communication.”

The Cutler’s search for more information about leukodystrophy – actually a quick Google search – led them to discover the DeKalb-based United Leukodystrophy Foundation.

ULF is a nonprofit, voluntary health organization that serves individuals and families affected by leukodystrophy by exchanging information and promoting progress on research, treatment and prevention. The foundation is celebrating its 35th anniversary this year.

The ULF was founded in 1982 by neurologist and researcher Hugo Moser. At first, annual meetings of the ULF took place in Baltimore. When the position of president became vacant, Moser suggested that Sycamore resident Paula Brazeal assume the position. She accepted the leadership of ULF and with her husband, Timothy Ronald “Ron,” Brazeal, acting as executive director, the Brazeals led the ULF for more than 30 years. Brothers Park in Sycamore is dedicated to the memory of their sons, Howard and Timothy, who both died from adrenelukodystrophy.

The annual meeting of the ULF moved from Baltimore to the Chicago area, first to the University of Chicago and then to the DeKalb/Sycamore area.

Ron Brazeal died in 2011 and Paula Brazeal died in 2012. The ULF moved its office from Sycamore to its current location at 224 N. Second St., Suite 2, in DeKalb.

ULF President Robert Rauner’s son Kevin died from adrenoleukodystrophy 14 years ago, and his son Paul has an adult form of adrenomyeloneuropathy. Rauner has been involved with ULF for 23 years and describes the nonprofit as “life-saving.”

“By helping newborns receive genetic screenings, connecting families with doctors and therapies and funding research through grants, our goal is to help do the most good for people before, during and after a diagnosis of leukodystrophy,” Rauner said. “We want to find a cure in our lifetime. If we could save another family from going through what we did, that’s our true reward.”

Each year, the ULF hosts an annual Family Conference and Scientific Symposium to encourage networking between families, doctors and medical researchers in the leukodystrophy field. The ULF also awards grant funding to researchers from all over the world, and the researchers present to their colleagues during the symposium.

“After hosting the event in the DeKalb/Sycamore area for about 30 years, we move the event to a different location in the U.S. every year so that it is accessible to more people,” said Keely Haag, ULF administrative staff. “It’s a way for people to come together outside of a hospital setting to help and communicate with each other as much as possible in the face of a devastating disease.”

This year’s event was held in Minneapolis in July and was attended by more than 250 people, including about 60 medical professionals. Next year’s event will be in June in Charlotte, North Carolina, and in 2019 in Denver.

By attending this year’s event, the Cutler family was able to meet other families going through similar circumstances. The Cutlers were able to see children, teenagers and adults with their leukodystrophy and saw Clark’s possible progression.

“Each type of leukodystrophy is so different – what could be a miracle for one type, like a bone marrow transplant, could lead to a regression in other types, like Clark’s,” Jason Cutler said. “We just don’t know what will happen in the future. We look for a way to overcome and surpass the disease and to bring attention and awareness to leukodystrophy.”

The Cutlers were recently notified that Clark will soon participate in the Celebrating Abilities in Physical Education program at Northern Illinois University, helping future physical education teachers learn how to teach children with disabilities.

“Clark teaches us to think in a different way and to realize that we all have unique characteristics to bring to the table,” Jen Cutler said. “Clark has gone through so much in his short life; he’s still very young. Our hope is that Clark will be an inspiration to others and teach them about his rare condition.”

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