United Leukodystrophy Foundation Going Strong After 35 Years

Two-year-old Clark Cutler’s parents felt alone when dealing with his rare disease, until they stumbled upon the United Leukodystrophy Foundation.
Clark was diagnosed with Pelizaeus-Merzbacher disease when he was just three months old. This is a rare type of leukodystrophy which normally is inherited, but in Clark’s unique case, was the result of a spontaneous mutation.

Pelizaeus Merzbacher disease (PMD) is a genetic disorder that targets the central nervous system, specifically the part that makes up the white matter of the brain which is the protective covering of the nerves. Without it, functioning causes problems that get increasingly worse over time. To learn more about PMD, click here.

After browsing the internet for an answer to help them with their troubles, they stumbled upon the United Leukodystrophy Foundation. This is a non profit health company that serves people and families suffering from PMD and other forms of leukodystrophy. Through unity and the exchange of information, their aim is to promote progress on research, treatment and prevention. This year, they are celebrating their 35th anniversary. The ULF President Robert Rauner stated to The MidWeek,

“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… 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.”

It’s tradition for the ULF to organize an annual Family Conference and Scientific Symposium where families can network with researchers in the field. This year, over 250 people attended the conference in Minneapolis. Next year, the event will take place in Charlotte North Carolina and already has plans for a Denver hosting in 2019.

The Cutler family was able to attend the conference this year and engage with other families just like them. Clark met with children going through the same challenges. This filled the family with hope, because they recognized Clarke’s potential in treatment and recovery.

The Cutlers were delighted to learn that Clark will take part in the Celebrating Abilities in Physical Education program at Northern Illinois University, where aspiring P.E. teachers mentor 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.

To check out the ULF, click here. To donate to the ULF, click here. To read more about their story in The MidWeek, click here.

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