Congressmen Garamendi, Lance, and Bilirakis Bring Attention to Rare Diseases in Press Conference with Vacaville Advocate Running Across America
Washington, DC – Today, Congressmen John Garamendi (CA-03), Leonard Lance (NJ-07), and Gus Bilirakis (FL-12) held a bipartisan press conference with Noah Coughlan of Vacaville, California, who is currently running across America to bring attention to rare diseases, including Lou Gehrig’s Disease (ALS), Batten Disease, and Cystic Fibrosis. Because rare diseases affect relatively few people, there is not enough of an economic incentive for pharmaceutical companies to invest the significant research dollars needed toward a treatment or cure. The Congressmen and Mr. Coughlan expressed support for the House Energy and Commerce Committee’s 21st Century Cures legislative initiative to accelerate the development of medical breakthroughs for these and other illnesses.
“Families across America are suffering from rare diseases. We can and must find cures through accelerated research and development. Noah’s remarkable feat reminds us that Americans can accomplish great things. I am proud to call Noah my constituent and to lend my voice to this effort to find 21st Century Cures,” said Congressman Garamendi.
“30 Million Americans affected by a Rare Disease or Disorder. These are not just statistics or numbers. These are real people with real challenges. It is imperative the We, as A Nation, and as a People, address their plight. I stand in support of this bipartisan effort to make their lives better,” said Noah Coughlan.
“By marking Noah’s incredible accomplishment we highlight yet another advocate who has given their time, energy, talent and voice to our effort. We need everyone to join us in our ongoing fight for better, faster cures and to bring attention to the struggle of millions battling rare disease,” said Congressman Lance, co-chair of the bipartisan Rare Disease Caucus.
“Noah’s advocacy on behalf of rare diseases patients is truly remarkable. Thirty million Americans suffer from a rare disease, and if we come together, we can get them better cures, faster,” said Congressman Bilirakis.
Rare diseases are defined as those that affect fewer than 200,000 individuals in the United States. A total of 30 million Americans have one of the 7,000 known rare diseases. Many of these diseases have debilitating consequences for their victims. For more information on 21st Century Cures, to https://energycommerce.house.gov/cures.
Noah is just the third person to run across America three times. He is also the youngest.