Currently, the only form of treatment for a person diagnosed with MLD is a bone marrow or stem cell transplant, and these are typically only performed on people who do not display any significant symptoms of MLD.

Various hospitals in the country currently perform bone marrow and stem cell transplants.  Duke University is a leader in performing stem cell transplants in children with MLD, while University of Minnesota has performed many bone marrow transplants for MLD patients.  Click here for a slide show of Jack Evanosky's stem cell transplant journey.

The advantage that stem cell transplants have over bone marrow transplants is that stem cells do not have to match as closely as bone marrow, and therefore is much easier to obtain.  In addition, doctors have found that patients who receive stem cell transplants seem to show more improvement than patients who receive bone marrow transplants.  Click here to read a paper on the effectiveness of umbilical cord stem cell transplants for children with inherited metabolic disorders such as MLD.

Click here to view 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.

Click here to read about the latest efforts in MLD research.

A family that we have gotten to know on this journey is the Trimpers.  Jane and Jeff Trimper live in Michigan, and they also have three children who were diagnosed with juvenile MLD in 2003.  All of the children received transplants, and their local news station put together an excellent series of videos that chronicles the family's journey through diagnosis and transplant.  Please click here to see the family's journey.

• 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
• An article that appeared in the Summer 2008 issue of Cancer Center Notes tells the story of the longest surviving cord blood transplant recipient.

If you know of a child or loved one who was recently diagnosed with MLD and are looking for information regarding umbilical cord stem cell transplants, please contact Dr. Joanne Kurtzberg at Duke University by e-mail at kurtz001@mc.duke.edu.  You may also view the Pediatric Blood and Marrow Transplantation site.

For developmental evaluations and questions regarding the progression of MLD symptoms, Dr. Maria Escolar at the University of North Carolina Center for Development and Learning is a recognized expert in this field.  Click here for information about the program for Neurodevelopmental Function in Rare Disorders, under the direction of Dr. Escolar, which helps children and families affected by rare pediatric neurological conditions.

You may also contact Bob Evanosky at The Evanosky Foundation at (630) 236-8039 or by e-mail at bobevanosky@evanoskyfoundation.org.

For information on how to care for a person or child with MLD, click here.

• Click here for additional resources that may be helpful for families caring with a child or person affected by MLD.

• 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.

• Bethany's Hope Foundation is devoted to MLD research.

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

• Athena's Hope is involved with fundraising for MLD research.

• 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.

• The MLD Foundation offers an e-mail support group for families affected by MLD.