A L D Research | Advocacy | Famliy Support We are a 501(c)3 non-profit organization. All donations are fully tax-deductible.
The Myelin Projectwas established in 1989 by Augusto and Michaela Odonefor their son Lorenzo who suffered from ALD -a rare genetic myelin disease that deteriorates myelin in the brain and central nervous system. Although not medical doctors, the Odones developed a treatment, Lorenzo's Oil now adopted throughout the world. The story of the Odones' struggle against ALD was dramatized in the 1992 Universal Studios releaseLorenzo's Oil starring Nick Nolte and Susan Sarandon. For information on how to obtain the oil, click here.
We are excited to announce that the federal advisory committee for diseases in newborns voted to recommend the addition of Adrenoleukodystrophy to the national Newborn Screening list. This means that we are one step closer to ALD newborn screening nationwide! Thank you for helping #SaveTheBoys.
October 10th, 2015 Pennsylvania advocates to host the Run For Research 5K Run/Walk & Family Fun Day to benefit The Myelin Project Research Fund. Learn more...
February 6th, 2016 We're happy to announce we'll be hosting theRagin' Cajun Fundraiser for AMNat Corpus Christi Parish Hall in Pacific Palisades, California. The event will feature a live band, three course meal, raffle, and live auction prizes. Learn more...
We are honored to welcome Kathy Slote to our Board of Directors.
She recently retired as Senior Credit Officer and Executive Vice
President of the Commercial Real Estate Group of Wells Fargo Bank.
August 4th, 2015
Ian Duncan, Chair of our Scientific Advisory Committee, awarded
Lifetime Excellence in Research Award from the American Veterinary
Medical Association for several years of work in myelin disease
research. Learn more...
May 15th, 2015
The Children's Hospital of Philadelphia & The Leukodystrophy Care Network launch Leukodystrophy Center of Excellence. Learn more... April 17th, 2015 The 2015 Trap Shoot Fundraiser in Lincoln, CA to benefit The Myelin Project Research Fund raises over $30,000! Learn more... January 1st, 2015