The Evanosky Foundation - Fighting MLD and Leukodystrophies

Research is currently being done by several groups on MLD:

Shire has announced that it will begin enrolling patients in a natural history study for enzyme placement therapy in 2007. Click here for more details. For information on other natural history studies, click here.
Dr. Joanne Kurtzberg and her colleagues have been working on a cell replacement therapy at Duke University. As of mid-2007, this research was being reviewed by the FDA. Shire, a US-based pharmaceutical company, recently purchased an enzyme replacement drug/therapy called Metazym. Click here for more information on MLD enzyme replacement therapy.
A team at the San Raffaele Telethon Institute for Gene Therapy in Milan, Italy is working on gene therapy research to deliver the ARSA enzyme to tissues affected by MLD. A new article on cell replacement therapy from this same group appeared in The Journal of Neuroscience on March 22, 2006.
For more information on other promising MLD research, click here.

An article from e-Medicine that describes MLD in detail (may require you to log in, but it's free).

In December 2007, Dr. Vinod Prasad of Duke University presented a paper describing how cord blood transplants are an effective treatment for children with metabolic disorders, such as MLD. However, the children must be treated before significant symptoms appear. Click here for the full article.
On December 20, 2005, President George W. Bush signed into law a bill establishing a national umbilical cord blood program providing federal funding to collect and store cord blood for life-saving blood cell transplants and reauthorizing the existing national registry for marrow donors. The combined program has been named the C.W. Bill Young Cell Transplantation Program. The bill will provide $79 million in federal funding to increase the number of cord blood units available for matches. The goal is to provide an additional 150,000 cord blood units for public use and establish a system that allows transplant physicians access to adult volunteer donors and cord blood units. For the full article, click here.
Link to a video of Dr. Joanne Kurtzberg discussing stem cell transplants (click on "Dr. Joanne Kurtzberg" on the lower right-hand corner of page that appears). Click on "Cord Blood Transplants" to hear MLD mother Jane Trimper discuss the benefits of using cord blood for stem cell transplant.

Article describing Dr. Joanne Kurtzberg's cord blood transplant program at Duke.
What is Cord Blood?
This article on umbilical cord blood discusses the benefits of cord blood donation, discusses the donation process and reviews private vs. public donation

The Trimper Family has three children affected by MLD and has been instrumental in gaining support and generating funds to support MLD research. View their website at www.trimperchildren.org.

The Stennis Foundation is devoted to raising MLD awareness and funding MLD research.

Founded by Augusto Ordone of Lorenzo's Oil fame, The Myelin Project focuses on myelin-related disorders.

Emma's Foundation donates to research programs helping with treatments or potential cures for MLD.

Hunter's Hope was founded by former Buffalo Bill quarterback Jim Kelly after his son, Hunter, was diagnosed with Krabbe's Disease, which is another leukodystrophy. Click here to read an article on Hunter and their organization's efforts.