Chelette reached out to me to share her son’s story and I was so impressed with how determined she is as a mother. Many of us ALD moms have been forced to fight with doctors to find the correct diagnosis for our sons. In this family’s story, this mom wasn’t just fighting for her son, […] […]

Ten days ago I got a text from a dear friend from MA, “Watching the news on NBC – it’s about newborn screening for ALD.” I stopped what I was doing, went to the computer and Googled — NBC, MA, ALD and this popped up. CLICK HERE I thought, What a great ALD story! I […] […]

For most people, Facebook is all about travel pictures, political comments and dog videos, but for me it’s largely about connecting with the ALD and other Leukodystrophy communities. Last weekend, I stumbled on a post from a mom that I wanted to share. Much of the focus on our diseases lately has about getting an […] […]