[Congressional Record (Bound Edition), Volume 158 (2012), Part 5]
[Extensions of Remarks]
[Page 6825]
[From the U.S. Government Publishing Office, www.gpo.gov]




             AMYOTROPHIC LATERAL SCLEROSIS (ALS) ADVOCATES

                                 ______
                                 

                          HON. CHELLIE PINGREE

                                of maine

                    in the house of representatives

                         Tuesday, May 15, 2012

  Ms. PINGREE of Maine. Mr. Speaker, today I am proud to recognize the 
hundreds of brave advocates who are visiting Capitol Hill from Maine 
and across the country to raise awareness about Amyotrophic Lateral 
Sclerosis (ALS), commonly referred to as Lou Gehrig's Disease.
  They are here today to share their stories, to educate others about 
the challenges they face, and to make sure that we continue to invest 
in the critical research and data collection that is essential to 
finally making a breakthrough in the fight against ALS.
  Some are here to advocate on behalf of themselves, and some are here 
to represent their loved ones, friends, and neighbors--far too many of 
whom have already been lost to ALS. They are all here to give voice to 
the many thousands of Americans who suffer from this disease but can't 
be here in person to speak for themselves.
  Because of their efforts, no Member of Congress will be able to say 
they haven't been touched by this terrible disease. And because of 
their efforts, I truly believe that one day in the not so distant 
future we will finally have a cure.
  I also want to honor one special individual in particular who had 
planned to be here today, before he lost his battle with ALS on April 
27, 2012 at just 34 years old.
  Joshua Kennedy led a life of exemplary service. He served his country 
bravely as a Sergeant in the U.S. Army Reserves, including eighteen 
months in Iraq as a petroleum supply specialist. He served his family 
as a devoted husband to his wife Ernesta and a proud father to his sons 
Tyler, Charles, and Andrew. He served his community in Maine as a 
correctional officer at Androscoggin County Jail in Auburn. Then after 
his diagnosis in March 2010, he began to serve his country in a way he 
never imagined--as a passionate advocate for ALS awareness.
  I had the distinct pleasure of meeting Josh in my Portland office not 
long after his diagnosis. I was struck by his compelling story, his 
warm smile, his love for his family, and his bravery in the face of 
unbeatable odds. He and Ernesta later traveled to Washington DC, where 
he brought his message to Congress and inspired action the same way he 
inspired the community who rallied around him and his family back home. 
Even as his voice eluded him and his body began to fail him, it was 
clear that his spirit remained strong.
  I had looked forward to seeing him again this year, and his presence 
is dearly missed today, as it will be for years to come. There are not 
enough words to appropriately honor his legacy or to comfort his family 
on their tremendous loss. But I know his advocacy was not in vain. It 
is because of people like Josh that we are making progress, bit by bit, 
and I look forward to the day when we can celebrate his memory with a 
cure for ALS.

                          ____________________