Day 18- Good Morning and Happy St. Patrick’s Day. Today’s event….


March 16, 2015

 Contact:          Matthew Kravitz (202) 731-3017  (Garamendi)

John Byers (202) 225-5361 (Lance)

Congressmen Garamendi and Lance to Welcome 

Rare Disease Advocate who is 

Running Across the United States for a Third Time. 


WHAT:          Tomorrow, Tuesday, March 17th, Congressmen John Garamendi (D-CA) and Leonard Lance (R-NJ) will welcome Noah Coughlan of Vacaville, California who is currently running across the length of America to bring attention to Rare Diseases. Upon completion, Noah will become the youngest person to run across the U.S. three times.


The bipartisan group of legislators will host a press conference to discuss the need to fight rare diseases. These diseases are defined as those that each affects fewer than 200,000 individuals in the United States. Often the number of people with the disease is far fewer. A total of 30 million Americans have one of the 7,000 known rare diseases, which includes Batten Disease, ALS, Huntington’s disease, and cystic fibrosis. Many of these diseases have debilitating consequences for their victims. Because they affect relatively few people, there is not enough of an economic incentive for pharmaceutical companies to invest the significant research dollars toward treatment or cures.


Energy and Commerce Chairman Fred Upton (R-MI) and Oversight and Subcommittee Ranking Member Diana DeGette (D-CO) are leading a 21st Century Cures legislative initiative to accelerate the development of medical breakthroughs for Rare Diseases and other illnesses. Learn more about it at


WHO:             Noah Coughlan of Vacaville, CA

                        Congressman John Garamendi (D-CA)

                        Congressman Leonard Lance (R-NJ), Rare Disease Caucus Co-Chair

WHERE:       House Triangle

                        Located on House side of the United States Capitol’s East Front


WHEN:          Tuesday, March 17th, 2015

                        4:30 PM

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