[Congressional Record Volume 144, Number 78 (Tuesday, June 16, 1998)]
[House]
[Pages H4612-H4613]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                     RETINAL DEGENERATIVE DISEASES

  The SPEAKER pro tempore. Under a previous order of the House, the 
gentlewoman from Florida (Ms. Ros-Lehtinen) is recognized for 5 
minutes.
  Ms. ROS-LEHTINEN. The gift of sight, Mr. Speaker, is one of our most 
precious. For those of us who are fortunate to have healthy eyesight, 
we often fail to recognize that there are those who suffer from 
debilitating diseases that impair their vision and that oftentimes may 
lead to complete blindness.
  Retinal degenerative diseases are a group of diseases that affect the 
eye's innermost layer. They are inherited, the hereditary pattern 
varying from family to family.
  The most common forms of the diseases are macular degeneration, which 
is the leading cause of blindness among seniors, retinitis pigmentosa, 
and Usher's syndrome.
  Retinitis pigmentosa is an inherited disease that is usually 
diagnosed at childhood and is characterized by an increasing loss of 
peripheral vision. Usher's syndrome is also inherited and is 
accompanied by varying degrees of deafness and the development of 
retinitis pigmentosa. Macular degeneration is thought to be caused by a 
combination of genetic and environmental factors and is characterized 
by a loss of central vision.
  These diseases can be detected in routine eye exams; however, they 
are fairly difficult to diagnose in their early stages. Retinal 
degenerative diseases cause a loss of vision due to loss of light-
sensing photoreceptor cells in the retina. They are responsible for the 
loss of sight of over 6 million Americans across our country. These 
diseases unfortunately have no treatment and no cure.
  Last Wednesday, along with the Foundation Fighting Blindness and a 
very special family from my congressional district, the Lidsky family, 
we held a congressional briefing on retinal degenerative diseases. 
Three of the four Lidsky children, and they are the children of Carlos 
and Betty Lidsky, have been affected by retinal degenerative diseases. 
One of these wonderful children, Isaac, spoke at this briefing and 
detailed to us how he has been affected by this disease. Isaac, who 
aspires to be an attorney just like his father one day soon, has big 
dreams. One of them is to find a cure for this disease that is 
responsible for slowly taking away his eyesight.
  Isaac and his sisters, Doria and Ilana, who also have this challenge, 
reminded us that this disease has overwhelming effects on the lives of 
those who are afflicted. He also reminded us about the bravery and the 
perseverance of the human spirit. He is not letting this disease 
conquer his dreams nor his hopes of someday very soon finding a cure.

[[Page H4613]]

  My colleagues and I also had the opportunity to meet Patrick Leahy, a 
young 25-year-old Maryland native who works in the office of Senator 
Fred Thompson. Patrick is afflicted with Leibers, one of the forms of 
retinitis pigmentosa.
  Regardless of the debilitating effects of these groups of diseases 
that Patrick and Isaac are afflicted with, they are both successful 
young men who make us proud of their accomplishments and of their 
unwavering optimism.
  I would like to thank Isaac, Doria, Ilana, Patrick and all Americans 
who are dealing every day with these diseases. We want to offer them 
additional hope for a future in which we can soon eradicate retinal 
degenerative diseases.
  Research scientists at the Foundation Fighting Blindness are making 
significant and exciting advances in the fight against retinal 
degenerative diseases. The most solid advances have been in the 
discovery of several new genes whose mutations cause retinal 
degenerations. These discoveries are critical, because they allow us to 
come closer to understanding the causes of these diseases and how one 
day doctors will be able to repair these genetic mutations.
  There have been significant discoveries in the areas of molecular 
engineering and gene therapy. There have been significant advances made 
in the lab with vectors which are modified viruses that transport 
normal replacement genes into cells to help them function. This past 
year, there was significant improvement in the new generation of 
vectors which have the potential of being safer and more effective.
  In the area of retinal transplantations, animals tested in labs with 
pigment cell transplantation proved that such procedures can 
effectively delay the degenerative process.
  These tests must now be taken to the clinical trial level where we 
can find out their effectiveness on humans. This is why it is very 
critical to promote educational research.
  Our prayers are with the Lidsky family and with all of those who are 
similarly affected.

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