The Myelin Project

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. The story of the Odones’ struggle was dramatized in George Miller’s 1992 film Lorenzo’s Oil starring Nick Nolte and Susan Sarandon. The Myelin Project joined ALD Connect in 2019.

July 26, 2019

Dear Supporters,

The Myelin Project has been serving people living with adrenoleukodystrophy (ALD) and adrenomyeloneuropathy (AMN) for 30 years, and it has been my privilege to serve as the President and Board member for more than 20 of those years. We are grateful for your generous support as it has allowed us to directly fulfill the needs of ALD and AMN families, raise awareness through the creation of educational tools and contribute to research advances that are now ushering in novel treatments being tested in clinical trials. With all that we have accomplished, we realize that we are now at an inflection point and see an opportunity to further our mission to ultimately treat and cure ALD and AMN. Therefore, I am happy to announce that we have chosen to join forces and from this point forward merge into ALD Connect.

When Augusto and Michaela Odone established The Myelin Project for their son Lorenzo who suffered from ALD, they were pioneers in showing the power that patient advocates can play in driving forward treatments. ALD Connect is a group of ALD patients, patient advocates, clinicians and researchers who are empowering patients, raising awareness, and accelerating the translation of scientific advances into better clinical care.

ALD Connect shares the same mission as The Myelin Project and has complementary programs such as a patient registry, industry advisory council and an annual educational conference which is why we have enthusiastically and confidently made the decision to have ALD Connect lead and continue our programs.

It has been an honor to continue the legacy of our dear friends Augusto, Michaela and Lorenzo, and I am committed to managing a smooth transition. I will be joining the ALD Connect Board and will help drive forward our shared mission to improve the lives of individuals with ALD and AMN by raising awareness, education, supporting the patient community and promoting research and partnerships needed to advance novel treatments.

The Myelin Project has greatly valued the support of our friends and donors as it is only through your generosity and support that we have been able to raise awareness, support families with ALD and advance research. I hope you will join me in continuing that commitment through ALD Connect. I know that together we will be much stronger and better able to serve the growing and evolving needs of the ALD and AMN communities.

With sincere thanks,

Patti Chapman
President, The Myelin Project