Help us raise money

Hello, we are the Janzen-Reimer family. When our youngest child, Matt, was 7 years old, he came home from school with a severe headache, fever and vomiting. We thought he had the flu. Very soon after, we had to rush Matt to the emergency room, as he had become unresponsive. We quickly learned Matt was having an adrenal crisis, and the doctors thought he might have Addison's Disease, especially when they saw his permanent tan. We nearly lost Matt that night. After five days of hospitalization, many tests and weeks and weeks of waiting for results, we were told Matt has Adrenoleukodystrophy (ALD). We had never heard of it. ALD is a rare demyelization disease that can affect the spinal cord and adrenal glands due to the absence of a protein that breaks down the very long-chain fatty acids (VLCFAs). Fortunately, Matt has the adrenal insufficiency type and is now 20 years old and doing well with daily medications. We are grateful every day. Matt has yearly appointments with specialists in Minneapolis, MN. 

There is no cure for this disease yet, but some treatments are available with mixed outcomes. Please join us in raising funds for continued research and better life-saving outcomes for ALD boys and men with the more severe cerebral type. All funds will go to the University of Minnesota's Leukodystrophy Center for ALD Research https://med.umn.edu/pediatrics/programs-centers-institutes/leukodystrophy-center .