[Congressional Record Volume 162, Number 115 (Friday, July 15, 2016)]
[Extensions of Remarks]
[Page E1142]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




    RECOGNIZING RIDE4GABE FOR BRINGING NEEDED AWARENESS TO DUCHENNE 
                           MUSCULAR DYSTROPHY

                                 ______
                                 

                           HON. BRADLEY BYRNE

                               of alabama

                    in the house of representatives

                        Thursday, July 14, 2016

  Mr. BYRNE. Mr. Speaker, on behalf of Representatives Aderholt (AL), 
Black (TN), Blackburn (TN), Brooks (AL), Chabot (OH), Collins (NY), 
Fudge (OH), Gibbs (OH), Guinta (NH), Hanna (NY), Higgins (NY), Joyce 
(OH), Kelly (PA), Palmer (AL), Pingree (ME), Poliquin (ME), Reed (NY), 
Renacci (OH), Roby (AL), Roe (TN), Rogers (AL), Sewell (AL), Stefanik 
(NY), Tiberi (OH), Turner (OH), Wenstrup (OH), and Yarmuth (KY), I want 
to recognize three men who will attempt to pedal their bicycles from 
Houlton, Maine to Mobile, Alabama between July 29 and August 8, 2016. 
Ride4Gabe, as it is called, will take the cyclists on a route that is 
approximately the same distance as the Tour de France in only eleven 
days. As they pedal 200 miles per day the men will endure substantial 
physical and mental hardship. The cycling effort alone is worthy of 
recognition, but these cyclists insist it is their cause that should be 
known by the American people. Ride4Gabe is really about ending Duchenne 
Muscular Dystrophy.
  According to Parent Project Muscular Dystrophy, Duchenne is the most 
common fatal genetic disorder diagnosed in childhood, affecting 
approximately 1 in every 3,500 live male births (about 20,000 new cases 
each year worldwide). Because the Duchenne gene is found on the X-
chromosome, it primarily affects boys; however, it occurs across all 
races and cultures.
  Duchenne results in progressive loss of strength and is caused by a 
mutation in the gene that encodes for dystrophin. Because dystrophin is 
absent, the muscle cells are easily damaged. The progressive muscle 
weakness leads to serious medical problems, particularly issues 
relating to the heart and lungs. Young men with Duchenne typically live 
into their late twenties.
  Michael Staley, 35, of Birmingham, Alabama, and Wes Bates, 21, of 
Aurora, Colorado, began Ride4Gabe in 2014 when they rode across Oregon, 
Idaho, Wyoming, Nebraska, South Dakota, Iowa, Illinois, Kentucky, 
Tennessee, and Alabama. Payne Griffin, 23, of Washington, D.C. will 
join Michael and Wes this year. The trio will be supported by a crew of 
volunteers as they pedal across Maine, New Hampshire, Vermont, New 
York, Pennsylvania, Ohio, Kentucky, Tennessee, and Alabama.
  The Ride4Gabe team will meet with Duchenne patients, rare disease-
impacted families, elected officials, and other community leaders 
throughout their journey. They will educate people about Duchenne 
Muscular Dystrophy. They will highlight the challenges associated with 
Duchenne through the lens of Gabe Griffin and Duchenne patients all 
along their route. They will discuss how medical research has the 
Duchenne community on the verge of solving this problem that nobody has 
survived to date. They will raise awareness about rare disease drug 
approval policy and how it relates to Duchenne.
  On behalf of my colleagues representing the congressional districts 
along the Ride4Gabe 2016 route, I am pleased to submit this statement 
to the Congressional Record. The awareness raised through Ride4Gabe 
will lead to greater public awareness about Duchenne Muscular 
Dystrophy. It is our hope that Gabe Griffin and every other patient who 
suffers from Duchenne Muscular Dystrophy will soon have access to a 
treatment, and ultimately a cure.

                          ____________________