Newly Diagnosed

Information for ALD Parents

Research

Funding medical research since 1989

Advocacy

Awareness, Education, & Newborn Screening

Support

Financial assistance to low-income ALD families

We are a 501(c)3 non-profit organization focused on improving the quality of life for those living with adrenoleukodystrophy (ALD) and adrenomyeloneuropathy (AMN) through research, advocacy and family support. Learn more about us…

News

ALD Family Weekend

September 2, 2019 BY The Myelin Project

Please join us on Friday, May 1st through Sunday, May 3rd for a relaxing weekend...

Newborn Screening Family Education Survey

April 7, 2019 BY The Myelin Project

This survey is being conducted by Expecting Health, a non-profit organization fo...

Orchard Therapeutics’ OTL-200 Receives Rare Pediatric Disease Designation from FDA for Treatment of Metachromatic Leukodystrophy

May 7, 2018 BY The Myelin Project

Orchard’s fourth Rare Pediatric Disease Designation for autologous ex vivo gen...

NORD Statement on Governor Bevin’s Veto of Kentucky Senate Bill 7

April 11, 2018 BY The Myelin Project

Washington, D.C., April 11, 2018 – The National Organization for Rare Disorder...

Events

You can make a difference.

Our Partners

What People are Saying

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My 11 year old son has ALD. He underwent a bone marrow transplant in 2014 and I had to quit my job to be with him. The Myelin Project’s family support program put food on our table and made sure our power and water stayed on.

Mollie H.

Client Served

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Thank you for the teaching packet for ALD and Lorenzo’s Oil. I will be using this packet with my Associate Degree RN students in their Pediatric Nursing Course. Having the pathophysiological as well as the ethical component allows me to engage my students on many levels.

Ellen K.

PROFESSOR

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I have shown Lorenzo’s Oil to my advanced chemistry students for years. It is a powerful way to teach chemistry, biology and chemistry. Thank you very much!

Todd H.

Teacher