The Myelin Project

The Myelin Project company information, Employees & Contact Information

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 research, advocacy and family support. We fund research to advance treatment and to find a cure, raise awareness and promote education, advocate for newborn screening, and 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 developed a treatment and named it Lorenzo’s Oil which is now an adopted treatment throughout the world. The story of the Odones’ struggle was dramatized in George Miller’s 1992 film Lorenzo’s Oil starring Nick Nolte and Susan Sarandon. 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.

Company Details

Employees
5
Founded
-
Address
Po Box 39, Pacific Palisades,california 90272,united States
Industry
Non-Profit Organization Management
HQ
Pacific Palisades, California
Looking for a particular The Myelin Project employee's phone or email?

The Myelin Project Questions

Top The Myelin Project Employees

Free Chrome Extension

Find emails, phones & company data instantly

Find verified emails from LinkedIn profiles
Get direct phone numbers & mobile contacts
Access company data & employee information
Works directly on LinkedIn - no copy/paste needed
Get Chrome Extension - Free

Aero Online

Your AI prospecting assistant