Honoring Noah Goughlan's Run 4 Rare
Floor Speech
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Mr. GARAMENDI. Mr. Speaker, I, along with Rare Disease Caucus Co-Chairs Congressman Leonard Lance and Congressman Joseph Crowley, and Rare Disease Caucus Members Congresswoman Doris Matsui and Congressman Gus Bilirakis, submit the following Resolution:
Whereas, rare diseases affect nearly 30,000,000 people in the United States and 350 million people worldwide, and therefore touch every State and Congressional district in America;
Whereas, Noah Coughlan from Vacaville, California, is set to complete his third ``Run 4 Rare'' journey across the United States of America on July 4th, 2015 to raise awareness for rare diseases, making him the third and youngest person to complete this achievement;
Whereas, the first steps of this journey were inspired by Catie and Annie Allio, two young girls born with Batten Disease, a rare disease that is heritable and which results in neurological degeneration that leads to death;
Whereas, rare diseases and disorders affect small patient populations in the United States of generally less than 200,000 individuals, and there are approximately 7,000 rare diseases identified in the United States at this time;
Whereas, millions of Americans have rare diseases for which there is no approved treatment, and people with rare diseases continue to face obstacles in accessing accurate diagnoses, sufficient treatment options, appropriate medical care expertise, and equitable reimbursement;
Whereas, the Orphan Drug Act and the Food and Drug Administration Safety and Innovation Act have helped to drive innovative and patient-centered advancements in research and treatment for rare diseases, yet there is much to be done;
Whereas, for the 10,000 total known diseases, there are treatments for only 500, and new drug development currently takes around 14 years and over $2 billion, causing 95 percent of drugs development efforts to fail before a product is brought to market;
Whereas, Noah completed the first Run 4 Rare in 2011, a 2,500-mile journey from California to Florida that spanned over four months and brought together families and supporters across the country;
Whereas, Noah completed the second Run 4 Rare in 2013, a 3,100-mile journey from California to Massachusetts that spanned 105 days and carried the hope and momentum of the movement over nine mountain ranges, across three deserts, and through 17 states;
Whereas, Noah's third Run 4 Rare began at the Statue of Liberty on February 28, 2015 in honor of Rare Disease Day, and will be a 3,000-mile journey spanning 14 states;
Whereas, Noah carries with him an American flag flown in Iraq given to him by the United States Air Force courtesy of Travis Air Force Base in Fairfield, California, representing the resilience of rare disease patients, the bravery they exhibit in the face of adversity, and the freedom they seek through awareness and treatments;
Whereas, the Run 4 Rare effort symbolizes unity and hope across the United States for all Americans suffering from rare diseases, and all Americans who stand with them: therefore, be it
Resolved, that we the undersigned (1) support the spirit and message of Noah Coughlan's Run 4 Rare; (2) express solidarity with the rare disease community by committing to the development, advancement, and completion of a bipartisan 21'' Century Cures Initiative to help accelerate the discovery, development, and delivery of promising new diagnostic tools, treatments, and cures for patients; and (3) support a national and global commitment to raising awareness, advancing solutions, and celebrating the resilience and bravery of individuals with rare diseases and disorders worldwide.
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