We want to thank everyone who supported The Evanosky Foundation in its efforts to pass this bill. It is The Evanosky Foundation's goal to continue to support and advocate for early screening of all lysosomal storage disorders (there are 40 of them!) and we will not stop until all 50 states test all of their babies for these terrible diseases.
In a generous and unique addition to their wedding plans, John and Karen Harris decided to forego giving their guests the usual wedding favors and instead chose to purchase iPads for the 5200 transplant unit at Duke Children's Hospital. The amount that John and Karen donated was matched by The Evanosky Foundation, which allowed the purchase of 5 iPads along with a $500 iTunes gift card.
The iPads have already been used to distract patients during difficult medical procedures, connect via Skype with friends and family, play games, and learn about medical procedures and the human body.
John Harris befriended the Evanosky family in 2009 while they were living in the apartment complex near Duke University during John Evanosky's stem cell transplant. Originally from Virginia, John had moved to Durham with his fiance, Karen, while she attended Duke University's Fuqua School of Business. John became integrally involved in the House of Hope program, and worked with all of the families who utilized the apartments. John and Karen were married in June 2011, and donated the iPads in July. They have now moved to New York and we wish them the best as they start their new life! We are confident that their iPad gift will be a tool to help many children start their new lives on the transplant unit as well!
Team Evanosky finished another half marathon this summer at the 2011 Rock 'n Roll Half Marathon in Chicago on August 14, 2011! We had seven runners this year and raised over $15,000!
Don’t live in Chicago or want to do your own event? No problem! You can sign up with Team Evanosky and do your own fundraiser!
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 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!
The Evanosky Foundation P.O. Box 9234 Naperville, IL 60567
The Evanosky Foundation is a nonprofit, 501(c)(3) organization, and all donations are tax deductible. For more information, click here.