I wanted to give all you parents a heads up that the United Leukodystrophy Foundation will be having their annual conference in Eaglewood, IL. June 27-29. They will be offering travel stipends in the not too distant future, and I will post when the application is on their website. But, I thought I would give you time to put it on your calendar and start planning to attend. There will be many doctors who specialize in treating ALD as well as many families like yours, who got diagnosis through newborn screening. It's a great opportunity to meet people going through the same thing and get educated about the best way to manage the disease. They will also provide daycare and a support program for siblings of affected children. I have been attending since 2004 and go every year to meet the families and get updates on new clinical studies, treatments, etc. so I recommend you come if you can.
ULF Meeting in June: I wanted to give... - Parents of ALD Ne...
ULF Meeting in June
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