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 researchadvocacy and family support.  Learn more about us…



September 14, 2017 at 12:00 am Hotel Irvine Irvine, CA

RARE Patient Advocacy Summit

The 2017 RARE Patient Advocacy Summit brings rare advocates from across the globe together to Connect, Collaborate, and Activate. This educational conference creates a space for members of the rare

September 16, 2017 Bala Cynwyd, PA

5th Annual Cal’s Cupcake Challenge

October 4, 2017 Kansas City, MO

Child Neurology Society Conference

October 16, 2017 Washington, DC

NORD’s Rare Disease Breakthrough Summit

November 17, 2017 Bethesda, MD

ALD Connect Annual Meeting

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

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.


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.


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