Thanks to the generosity of our sponsors, volunteers, and participants, over the past decade we have contributed more than $165,000 to the Kennedy Krieger Institute for ALD research. This funding has enabled the doctors at Kennedy Krieger to develop a test to screen newborns for ALD. This test makes it possible for boys with the ALD gene to be identified at birth so that they can get treatment before symptoms develop, giving the man excellent chance to survive this otherwise deadly disease.
In July, 2012, Taylor Kane, the daughter of Run for ALD’s founder, Jack Kane, lobbied the New Jersey legislature for ALD screening, resulting in the recent introduction of NJ Senate Bill S2137, which provides for screening of all newborns for ALD in the state of New Jersey. In September ,2012, Taylor testified before New Jersey Senate’s Health and Senior Services Subcommittee in support of this legislation. Governor Christie signed the bill into law in July 2013, making New Jersey the third state in the nation to require newborns to be screened for ALD. Once fully implemented, this law should save many lives.
Run for ALD has also been involved in the effort to implement ALD newborn screening nationwide. In September, 2012, Taylor testified before an Advisory Committee of the Secretary of Health and Human Services in Washington,D.C., as they considered whether to recommend that all 50 states utilize this new technology to screen newborns for ALD. We will continue our efforts to ensure implementation of ALD newborn screening at the federal level. Finally, Run for ALD has also continued to fund the Kennedy Krieger’s Lorenzo’s Oil clinical trial, along with other avenues of medical research, in the hope of ultimately finding a cure for ALD.
Run for ALD is a member of the ALD-AMN Global Alliance, an organization consisting of ALD advocacy groups from around the world, whose common mission is to spread awareness of ALD, raise money for research, expand the bone marrow and cord blood registries and provide support, direction, and information to affected persons and their families. The ALD-AMN Global Alliance includes charitable organizations from the United States, the United Kingdom, France, Germany, and Australia.(www.aldamnga.org).