Jesse Torrey’s Smiles and Duck Tape

Jesse’s 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. Gathering stories that it can become a resource for ALD families to find their community and for non-ALD folks to better understand our disease.

Blog: Smiles and Duck Tape: Day to day life living as a family with ALD.

Book: Buy Smiles and Duck Tape

THIS is ALD: Stories from families living with ALD

ALD Alliance’s A Parent’s Guide to ALD

A guide to living with ALD.

Aidan Jack Seeger Foundation/ALD Alliance
After losing her son, Aidan to ALD in 2012 at the age of 7, Elisa started this foundation in his honor with the primary goal of having ALD Newborn Screening passed in every state. New York became the first state to start screening for ALD with the addition of “Aidan’s Law” in 2013. Since then, Elisa has worked to help other states add ALD by traveling across the country to speak at newborn screening committee meetings.

aldnewbornscreening.org

ALD Natural History Study

The aim of this registry to understand the natural history and disease progression in ALD and potentially develop bio-markers using the biospecimens collected using this registry.

Global Leukodystrophy Initiative

Longitudinal Natural History Study of Leukodystrophies.

ALD Clinical Trials

ClinicalTrials.gov is a resource provided by the U.S. National Library of Medicine.