Congressman Garamendi Salutes Constituent Noah Coughlan’s Efforts to Bring Attention to Rare Diseases
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Washington, DC—Today Congressman Garamendi recognized Noah Coughlan of Vacaville who is about to complete his third run across America to bring attention to rare diseases such as Cystic Fibrosis, Lou Gehrig’s disease (ALS) and Batten Disease. Noah is the founder of Run for Rare, a philanthropic organization predicated on Noah’s ability to complete incredible physical feats to raise money and awareness for rare diseases.
“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.
Noah’s journey began on February 28th, 2015 at the Statue of Liberty and will conclude this Independence Day at Ocean Beach in San Diego. Noah is dedicating the final two days of his run to Ethan, son of Congressman Garamendi’s niece, Robyn. Ethan is courageously battling adrenoleukodystrophy (ALD), a rare genetic disease that damages the material protecting the brains cells that regulate thought and muscle control. Rare diseases affect one in 10 Americans and 350 million people worldwide in some way. Many of these diseases have debilitating consequences for their victims.
Noah Coughlan shared several remarks before embarking on the final stage of his run. “I had the great privilege to stand in Washington, DC with our nation’s lawmakers in the Rare Disease Congressional Caucus and the Energy Commerce Committee. It was in conversation with Congressman Garamendi that I learned about ALD. Today I run for Congressman Garamendi’s niece Roby’s son Ethan from Northern California.”
Congressman Garamendi is a co-sponsor of H.R. 6, the 21st Century Cures Act. If enacted, this bill will help modernize health care, support cutting-edge medical research, and streamline the development of new drugs and medical devices. It will also deliver $10 billion in important new resources for the National Institutes of Health over the next five years. For more information on 21st Century Cures, visit https://energycommerce.house.gov/cures.
Noah is only the third person to run across the United States three times. For more information about his organization visit https://www.run4rare.org/.