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Shire is conducting a research study to better understand the natural history of Metachromatic Leukodystrophy (MLD). This study is designed to enroll children under 12 years of age whose symptoms first appeared at or before 30 months of age. Researchers hope that the information learned from this study will help with the development of a potential treatment.

The MLD Natural History Study is being conducted at multiple locations by doctors who specialize in MLD, and who are dedicated to supporting patients and families affected by MLD. Participation lasts two years and includes approximately ten visits to the study location.

Parents of eligible children may select their preferred MLD specialist / study location. Travel expenses to and from study-related appointments will be reimbursed by the study sponsor.

For more information, please go to UnitedForMLD.com or ClinicalTrials.gov

State of Illinois Senate Bill 1761

John, Bob, Sonya and Christopher Evanosky with Senator Dale RighterWe are glad to report that on August 23, 2011, Illinois Governor Patrick Quinn signed Illinois Senate Bill 1761 into law.  IL SB1761 was created by The Evanosky Foundation and filed by Illinois Senator Dale Righter on February 9, 2011.  This law requires the State of Illinois to test all future newborns for Mucopolysaccharidoses I and II (MPS I and II ) and Severe Combined Immunodeficiency (SCID).  Illinois is the first state in the US to screen for MPS I/II and will set the standard for all others to follow.  Please visit the Illinois General Assembly website to view the bill and its legislative history.

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. 

From left, Bob Evanosky, Lindsey Kearns, Gil Ciocchi, Christopher Evanosky, Dr. Joanne Kurtzberg, Karen Harris, John HarrisIn 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! 

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 babies affected by Krabbe Disease, metachromatic leukodystrophy (MLD), Pelizaeus-Maerzbacher Disease (PMD), Tay-Sachs disease or Sandoff Disease.  Click here for more information.

John, Jack and Christopher Evanosky, Fall 2004The Evanosky Foundation
234 Aspen Lane
Aurora, IL  60504

The Evanosky Foundation is a nonprofit, 501(c)(3) organization, and all donations are tax deductible.  For more information, click here.