[Congressional Record Volume 161, Number 45 (Tuesday, March 17, 2015)]
[Extensions of Remarks]
[Page E351]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                  HONORING NOAH COUGHLAN'S RUN 4 RARE

                                  _____
                                 

                          HON. JOHN GARAMENDI

                             of california

                    in the house of representatives

                        Tuesday, March 17, 2015

  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.