About Us

About Us

We are a 501(c)3 non-profit organization focused on improving the quality of life for those living with ALD and AMN through research, advocacy and family support. We believe we can accomplish our mission by pursuing the following initiatives to:

  • Fund research to advance treatment and to find a cure
  • Raise awareness, and promote education
  • Advocate for newborn screening
  • Provide financial support to low-income families

The Myelin Project was established in 1989 by Augusto and Michaela Odone for their son Lorenzo who suffered from adrenoleukodystrophy (ALD), a rare genetic disease that deteriorates myelin in the brain and central nervous system. Although not medical doctors, the Odones went on an investigative journey into the disease and were able to develop an oil treatment that has proven to slow the progress of the disease – and they named it Lorenzo’s Oil – which has now become an internationally recognized treatment, yet still not approved by the US FDA.  The story of the Odones’ struggle was dramatized in George Miller’s 1992 film Lorenzo’s Oil starring Nick Nolte and Susan Sarandon.

RESEARCH

ADVOCACY

FAMILY SUPPORT

Adrenoleukodystrophy (ALD) is a rare x-linked genetic brain disease that affects roughly 1 in 15,000 people. It has four different forms, or phenotypes. The most devastating appears in childhood, generally between the ages of four and ten years old. Normal, healthy boys suddenly regress rapidly. Symptoms begin with hyperactivity, withdrawal, and/or difficulty concentrating. As the disease continues to destroy myelin in the brain and nervous system, symptoms grow worse including blindness, deafness, seizures, loss of muscle control, and progressive dementia. Often this leads to either death or permanent disability usually within 2 to five years of diagnosis.

Adrenomyeloneuropathy (AMN) is the adult onset of adrenoleukodystrophy (ALD). In about half of the boys who inherit the mutated ALD gene, symptoms of the disease do not develop until young adulthood, and in general, they progress more slowly. Beginning in their 20s and 30s, these young men exhibit neurological based motor lesions in their extremities. These lesions progress over many years and are inevitably accompanied by moderate to severe handicap and in many cases, these symptoms lead to death.

OUR TEAM

Patti Chapman

President, Board Chair

Greg Benton

Program Director

Deb Edwards

TREASURER

Dr. Ian D Duncan

Scientific Adviser

Dr. Keith Van Haren

Clinical Adviser

Justin D’Agostino

Board Member, Patient Liaison

Jeremy Hill Sr.

BOARD MEMBER

Jean Kelley

BOARD MEMBER

Diane Love

BOARD MEMBER

Emily Reimer

BOARD MEMBER
Janis Sherwood

Janis Sherwood

BOARD MEMBER

Kathy Slote

BOARD MEMBER
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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

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

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

OUR PARTNERS