Run for ALD

Dedicated to Finding a Cure for Adrenoleukodystrophy

Join Y.A.C. (Young ALD Carriers)

Being a teen or young adult ALD carrier can be frightening and lonely. You most likely don’t know anyone else your age who is an ALD carrier, so there isn’t really anyone you can talk to who understands how you feel or what it means to be an ALD carrier. Your doctor probably isn’t very helpful, and that’s because there really isn’t much medical data out there pertaining to ALD carriers. (Let’s face it, many doctors are not even familiar with ALD at all). You probably learned that you are a carrier only after someone in your family, like a brother or father, got sick or died from ALD. You know that it’s a possibility that you could get physical symptoms at some point, and you worry about your reproductive options because you do not want to have children who have ALD. There are so many issues that young ALD carriers must confront.

My name is Taylor Kane. I am a 16 year old ALD carrier. My father died from ALD when I was five, and I’ve known that I am a carrier since I was very young. I started this group because I feel that young ALD carriers (YACs), as a group, are often overlooked and have very little peer or other support. They are basically ignored by the medical community, do not have access to the latest research on ALD carriers (what little research there is), do not fully understand their reproductive options, and have no one their own age to talk to about emotional ALD carrier-related issues. My goal is to provide a forum for YACs to share their experiences, ask questions, provide emotional support, and make other YAC friends. I will also provide information and/or links to up-to-date information that may be of interest to YACs, and start discussions which will hopefully provide insight into how YACs can be best supported – for example, when and how should girls be informed of their carrier status? Finally, for anyone who is interested in helping raise awareness of ALD, fundraising, or advocating for causes involving ALD carriers or ALD newborn screening in their communities, states, or nationwide, I will provide information, advice and assistance. I have a lot of experience in this area and have worked hard to raise awareness and get ALD newborn screening implemented in my home state of New Jersey. Young ALD carriers need to band together so our voices will be heard!

Please complete the form below if you would like more information about joining YAC. We have members from around the world including the U.S., Puerto Rico, the United Kingdom, Spain, France and Estonia.
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