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…


$50,000 Granted to Dr. Florian Eichler’s AMN Gene Therapy Research

In partnership with the Cure ALD Foundation, we granted $50,000 to Dr. Florian Eichler’s pilot study of gene therapy in adrenomyeloneuropathy (AMN). Dr. Eichler and his team have established an AMN animal model proof of concept showing a gene therapy approach could provide benefit where no treatment is currently available.

Currently, when young men with adrenoleukodystrophy (ALD) begin showing adult-onset signs of AMN, they slowly lose their ability to walk. This pilot will help move Dr. Eichler’s research program forward towards human studies. Learn more…

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February 10, 2018 at 1:00 pm 1 Bills Drive Orchard Park, NY

Hunter’s Day of Hope and Prayer 2018

The Kelly Family invites you to celebrate the 20 Year Anniversary of the Hunter’s Hope Foundation at the 2018 Hunter’s Day of Hope and Prayer for Children! “Come and see

February 25, 2018 Washington, DC

Rare Disease Week on Capitol Hill

You can make a difference.

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What People are Saying

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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