[Congressional Record Volume 140, Number 148 (Wednesday, November 30, 1994)]
[Senate]
[Page S]
From the Congressional Record Online through the Government Printing Office [www.gpo.gov]


[Congressional Record: November 30, 1994]
From the Congressional Record Online via GPO Access [wais.access.gpo.gov]

 
                     THE INSPIRATION OF ERIC LOPEZ

 Mr. HATFIELD. Mr. President, in this world there are people 
who choose to walk the well worn path, and there are those who choose 
``the road not taken.'' There are people who rise above personal 
obstacles to achieve what others thought impossible, and to give what 
others thought improbable. I knew one such individual for a good many 
years. His name was Eric Lopez, and in October, after a lifelong battle 
with Epidermolysis Bullosa, Eric passed away.
  Epidermolysis Bullosa causes severe blistering that scars the 
internal organs and deforms the hands and feet. In 1979, with the help 
of his mother, Eric started a non-profit research organization called 
D.E.B.R.A., which stands for Dystrophic Epidermolysis Bullosa Research 
Association. Instead of waiting for a cure, Eric spoke for hundreds of 
thousands of Americans and brought their story of EB ``out of the 
darkness and into the light.'' He chose the road not taken, and made a 
difference. Since the founding of D.E.B.R.A. in 1979, progress has been 
made.
  Under the leadership of Eric's mother, Arlene Pessar, D.E.B.R.A. has 
labored to increase the public's awareness of EB--I am sure the 
organization will continue to do so, inspired by the light of Eric's 
legacy. In the years since the plight of these children was brought to 
my attention, I have become increasingly aware of the importance in 
finding a cure, and alleviating the pain of Eric and many others who 
are suffering. Just the day before his passing a new bill to establish 
an Office for Rare Disease Research was passing the Senate, but 
unfortunately failed to be considered in the House. Now that a new 
session has commenced, it is one of my highest priorities to see that 
the bill is passed quickly. Our inspiration for swift passage must be 
Eric Lopez and the others who came before him including my friend Cal 
Larson, to honor their courage and determination to see change. That is 
why I bring Eric's story to you today, and why I ask you to join me in 
paying tribute to an individual who touched the lives of many with his 
strength and perseverance.
  Eric's valiant story can be found within the prose of a poem by 
Robert Frost, entitled ``The Road Not Taken''. I would like to read the 
final stanza of that poem today--in memory of Eric Lopez and the great 
lengths he took in order to improve the lives of so many. Eric made all 
the difference.

     I shall be telling this with a sigh
     Somewhere ages and ages hence:
     Two roads diverged in a wood, and I--
     I took the one less traveled by,
     And that has made all the difference.

                          ____________________