Sharing our family’s story and what we’re learning about ALD.
We’re a family living with ALD, sharing our story, what we’re learning, and resources that may help other families find their way. This site is for information and support. For questions about your family’s health, talk with your pediatrician, doctor, genetic counselor, or ALD care team. To learn more about ALD and find support, visit ALD Connect.
Film
Living in the Grey Zone
Alison shares our family’s experience with adrenoleukodystrophy (ALD), newborn screening, and living with uncertainty.
From the blog
- Living in the Grey Zone: A Mother’s Story of ALD and Uncertainty
- ALD Family Genetic Testing: How to Talk to Your Family
- Should Siblings and Other Children in the Family Be Tested for ALD?
- What If Your Family Doesn’t Want to Get Tested for ALD?
- How to Talk to Siblings About ALD: Making Space for Their Questions
- How to Talk to Your Child About ALD
Podcast
The Grey Zone
A conversation with Stephan Kemp, PhD, an ALD researcher at Amsterdam UMC, about ALD variants, newborn screening, and what a DJ has to do with ALD.
Recorded March 2021 · Hosted by Nic Adler
In association with ALD Family Weekend.
Recorded in 2021. Research and clinical guidance may have changed since then.
This site is for education and does not replace advice from your care team. Independent ALD specialist review of the medical guides is pending.
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