THIS is ALD (one story at a time)

THIS is ALD.jpg

For the past few months, I’ve been asking people to share their Adrenoleukodystrophy (ALD) stories to post on my blog, Smiles and Duct Tape. My goal has been to educate readers on all the different ways that ALD can affect people AND to prove the importance of Newborn Screening for ALD to help change the future of our disease.

The ALD community has been amazing — sharing honest, powerful, sometimes painful, sometimes beautiful pieces, and the stories continue to roll in. I’ve decided that it’s time to make THIS is ALD into it’s own blog.

Hopefully, we will gather so many stories here that it can become a resource for ALD families to find their community and for non-ALD folks to better understand our disease.

Welcome to THIS is ALD (one story at a time), the blog.

Love, Jess

If you have an ALD story, please contact me at




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