Many of you have seen the recent advertisements for the new movie Extraordinary Measures, starring Brendan Fraser and Harrison Ford. Typically, The Evanosky Foundation doesn't provide movie reviews, but this movie is slightly different because it touches on topics that we at The Evanosky Foundation hold dear.
The movie is based on the book The Cure, written by Pulitzer Prize-winning author Geeta Anand, which tells the story of the Crowley family after they learn that their two children have Pompe (pronounced pom-PAY) disease. Pompe disease is actually one of the diseases that The Evanosky Foundation advocates for in newborn screening, and as a result of our efforts, Illinois and Missouri are the first states to screen for this disease.
Pompe disease is a lysosomal storage disorder that is very similar to metachromatic leukodystrophy, the disease that affects the Evanosky boys. In both diseases, the body is missing an enzyme. In Pompe, glycogen builds up in the muscles so that the muscles can no longer expand and contract, rendering them ineffective. Children affected by Pompe are typically in a wheelchair and on a ventilator. Some children affected by Pompe have been effectively treated with enzyme replacement therapy, and Extraordinary Measures chronicles the Crowleys journey in making that a reality for their children.
Extraordinary Measures' production company has sponsored a video contest, where people can submit videos of their heroes. The video receiving the most votes will receive $10,000 towards the charity of the winner's choice. The Kerr family has created a video on behalf of their son, Jared, who has MLD and was transplanted two years ago. They have chosen The Evanosky Foundation as their designated charity!
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 recently opened two additional Houses of Hope in 2009, with a fourth scheduled for 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!
Extraordinary Measures' production company has sponsored a video contest, where people can submit videos of their heroes. The video receiving the most votes will receive $10,000 towards the charity of the winner's choice. The Kerr family has created a video on behalf of their son, Jared, who has MLD and was transplanted two years ago. They have chosen The Evanosky Foundation as their designated charity!
The Evanosky Foundation has recently been involved with promoting and advocating for newborn screening efforts in the State of Missouri. 
The Evanosky Foundation's first 
The Evanosky Foundation
