Bright “Orphan” Ideas Blossom

December 10, 2010

This week, the Republican Steering Committee selected Congressman Fred Upton (R-MI) to succeed Congressman Henry Waxman (D-CA) as Chair of the House Energy and Commerce Committee in the next Congress.  In August 2008, at the Democratic National Convention in Denver, Hyman, Phelps & McNamara’s Frank Sasinowski, the current chairman of the National Organization of Rare Diseases ("NORD"), had the idea to start a Congressional caucus on rare and neglected diseases in order to have a forum for issues that matter to the more than 25 million Americans with rare or orphan disorders.  Frank approached Rep. Waxman in Denver and broached the idea, which Rep. Waxman immediately supported.  Fast forward: NORD took up the idea and championed the creation of this caucus.  In forming this caucus, John Crowley, CEO of Amicus Therapeutics, (the subject of the film "Extraordinary Measures" as portrayed by Brendan Fraser), was "extraordinarily" instrumental.  Frank suggested to John that Cong. Upton be asked to co-chair the caucus.  Rep. Upton along with co-chair Rep. Joseph Crowley (D-NY) (no relation to John), announced the formation of the caucus this past July.  Now, Rep. Upton will be chairing the committee that has jurisdiction over FDA.  Orphan ideas are blossoming in December in DC!