What a whirlwind two days it's been, with two successive front page stories on Spectrum clients with heroic research commitments to extremely rare disorders affecting children.
First, Sunday's WASHINGTON POST (28 January 2007) told of the passing of Dr. Hugo Moser, a world-renown neurologist on staff at the Kennedy Krieger Institute, who was made famous (or perhaps infamous) in the 1992 movie "Lorenzo's Oil." Dr. Moser dedicated much of his life's work to achieving a greater understanding of the genetic disease called adrenoleukodystrophy or ALD, which afflicted Lorenzo Odone, now age 28 and unable to communicate or see. Our KKI team worked with POST author Shankar Vedantam for more than three months on this profile of Dr. Moser, who, sadly, passed away last week from complications following pancreatic cancer surgery.
Today's WALL STREET JOURNAL (29 January 2007) carries on its front page the amazing story of the Progeria Research Foundation. Progeria is a rare, fatal disease characterized by the appearance of accelerated aging in children, causing them to die from a heart attack or stroke in their early teens. Over the last eight months, Spectrum worked closely with health reporter Amy Dockser Marcus as she followed the Foundation through the arduous process of preparing for and ultimately launching a clinical trial, for her special series on rare diseases. The piece highlights the Foundation's efforts to drive Progeria research toward treatment and a cure for this devastating disease. Happily, the Progeria Research Foundation was granted approval to launch the first-ever clinical trial to study a potential treatment.
Please consider supporting these outstanding organizations and their missions. For further information, visit http://www.kennedykrieger.organd http://www.progeriaresearch.org, respectively.
Thanks,
John Seng
