On March 9, 2010, New Mexico Gov. Bill Richardson made New Mexico the third state in the U.S. to screen all babies for five lysosomal storage disorders (LSDs) -- Fabry, Gaucher, Krabbe, Pompe, and Niemann-Pick diseases -- all of which are similar to metachromatic leukodystrophy. The Evanosky Foundation worked closely with Julie Allen (pictured far right - the grandmother of a child with MLD - with Bob Evanosky and Gov. Richardson), along with two other advocates and Rep. Rhonda S. King,to pass this important legislation. The implementation of this law will allow approximately 28,000 babies each year to be screened for these diseases, which is especially beneficial for New Mexico since it has the highest incidence of Neimann-Pick C disease in the country.
San Raffaele Telethon Institute for Gene Theraphy (HSR-TIGET), based in Milan, Italy, is seeking eight pre-symptomatic MLD patients for a gene therapy clinical trial that will be begin soon. The trial will use a patient's own cells that have been genetically corrected to produce the Arylsulfatase-A (ARSA) enzyme. All study costs will be paid for by the researchers. For more information, http://www.evanoskyfoundation.org/PDF Articles/2010 Milan Gene Therapy Trial.pdf, or e-mail Dr. Alessandra Biffi at biffi.alessandra@hsr.it or Dr. Maria Sessa at sessa.maria@hsr.it.
A new study at Duke University Medical Center in Durham, North Carolina, is using a new approach to provide cord blood transplants for babiesaffected by Krabbe Disease, metachromatic leukodystrophy (MLD), Pelizaeus-Maerzbacher Disease (PMD), Tay-Sachs disease or Sandoff Disease. Click here for more information.
The Neurodevelopmental Function in Rare Disorders program at the University of North Carolina - Chapel Hill is seeking children to participate in two Krabbe studies. For more information, please click here.
Tragically, Brady Cunningham passed away on April 6, 2009. Our thoughts and prayers are with his family.
The Evanosky Foundation's first House of Hope, an apartment available to families of children using the services of the Duke Pediatric Bone Marrow Transplantation Program and the Neurodevelopmental Function in Rare Disorders Program at UNC-Chapel Hill, celebrated its grand reopening on December 21, 2008, when it welcomed its second MLD family. The House of Hope was briefly unoccupied when its first MLD family "graduated" and released by their doctors to head home. While the apartment was empty, it underwent major changes, including the installation of laminate hardwood flooring, designer furniture, and wall art. To see photos of the dramatic improvements, please click here.
Due to the dramatic success and the overwhelming demand for housing for post-transplant families, The Evanosky Foundation opened two additional Houses of Hope in 2009, and a fourth in 2010. You can help stock our newest House with the household items needed to make it a home away from home for families of post-transplant patients. Click here to find out more!
On March 9, 2010, New Mexico Gov. Bill Richardson made New Mexico the third state in the U.S. to screen all babies for five lysosomal storage disorders (LSDs) -- Fabry, Gaucher, Krabbe, Pompe, and Niemann-Pick diseases -- all of which are similar to metachromatic leukodystrophy. The Evanosky Foundation worked closely with Julie Allen (pictured far right - the grandmother of a child with MLD - with Bob Evanosky and Gov. Richardson), along with two other advocates and 
The Evanosky Foundation was involved with promoting and advocating for newborn screening efforts in the State of Missouri. 
The Evanosky Foundation's first 
The Evanosky Foundation
