[Congressional Record (Bound Edition), Volume 154 (2008), Part 12]
[House]
[Pages 17280-17282]
[From the U.S. Government Publishing Office, www.gpo.gov]




               PRIMARY LATERAL SCLEROSIS AWARENESS MONTH

  Mr. PALLONE. Mr. Speaker, I move to suspend the rules and agree to 
the resolution (H. Res. 896) recognizing the need to pursue research 
into the causes, a treatment, and an eventual cure for primary lateral 
sclerosis, supporting the goals and ideals of the Hardy Brown Primary 
Lateral Sclerosis Awareness Month, and for other purposes, as amended.
  The Clerk read the title of the resolution.
  The text of the resolution is as follows:

                              H. Res. 896

       Whereas primary lateral sclerosis (PLS) is a rare 
     neuromuscular disorder characterized by progressive muscle 
     spasticity and weakness in the voluntary muscles;
       Whereas PLS belongs to a group of disorders known as motor 
     neuron diseases. Motor neuron diseases develop when the nerve 
     cells that control voluntary muscle movement degenerate and 
     die, causing spasticity and weakness in the muscles they 
     control;
       Whereas Hardy Brown has worked tirelessly to raise funds 
     for research for ALS ``Lou Gehrig's disease'' which is a 
     fatal motor neuron disease, and is now diagnosed with primary 
     lateral sclerosis;
       Whereas the onset of PLS usually occurs after age 50. 
     Symptoms may include difficulty with balance, weakness and 
     stiffness in the legs, and clumsiness. Other symptoms may 
     include spasticity (sudden, involuntary muscle spasms) in the 
     hands, feet, or legs; foot dragging, and speech problems due 
     to involvement of the facial muscles;
       Whereas primary lateral sclerosis affects individual people 
     in different ways, and as a result, treatment programs will 
     vary;
       Whereas there currently is no cure for primary lateral 
     sclerosis, nor a way to slow or reverse the progressive 
     disability of this disorder;
       Whereas the Spastic Paraplegia Foundation is a volunteer-
     managed and operated non-profit organization devoted to 
     finding the causes and cures for two groups of 
     neurodegenerative disorders called Spastic Paraplegia 
     (Hereditary and Apparently Sporadic) and Primary Lateral 
     Sclerosis (PLS);
       Whereas the National Institute of Neurological Disorders 
     and Stroke at the National Institutes of Health conducts a 
     broad range of research on neuromuscular disorders such

[[Page 17281]]

     as PLS. This research is aimed at developing techniques to 
     diagnose, treat, prevent, and ultimately cure these 
     devastating diseases; and
       Whereas the month of February of 2009 would be an 
     appropriate time to recognize Primary Lateral Sclerosis 
     Awareness Month in order to educate communities across the 
     Nation about primary lateral sclerosis and the need for 
     research funding, accurate diagnosis, and effective 
     treatments: Now, therefore, be it
       Resolved, That the House of Representatives--
       (1) recognizes the need to continue research into the 
     causes, treatment, and an eventual cure for primary lateral 
     sclerosis;
       (2) commends those hospitals, community clinics, 
     educational institutes, and other organizations that are--
       (A) working to increase awareness of primary lateral 
     sclerosis; and
       (B) conducting research for methods to help patients 
     suffering from primary lateral sclerosis;
       (3) congratulates the work of the Spastic Paraplegia 
     Foundation for its great efforts to educate, support, and 
     provide hope for individuals who suffer from primary lateral 
     sclerosis, while funding research to help find a cure for 
     this disorder;
       (4) supports the designation of an appropriate time to 
     recognize ``Primary Lateral Sclerosis Awareness Month''; and
       (5) calls upon the people of the United States to observe 
     the month with appropriate programs and activities.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from New 
Jersey (Mr. Pallone) and the gentleman from Nebraska (Mr. Terry) each 
will control 20 minutes.
  The Chair recognizes the gentleman from New Jersey.


                             General Leave

  Mr. PALLONE. Mr. Speaker, I ask unanimous consent that all Members 
may have 5 legislative days to revise and extend their remarks and 
include extraneous material on the resolution under consideration.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from New Jersey?
  There was no objection.
  Mr. PALLONE. Mr. Speaker, I yield myself such time as I may consume.
  I rise in strong support of H. Res. 896, a resolution expressing 
support for Primary Lateral Sclerosis Awareness Month, and for the need 
to pursue research on this debilitating disease.
  Primary lateral sclerosis, or PLS, is a rare neuromuscular disorder 
characterized by progressive muscle spasms and weakness. As many as 
2,000 Americans suffer from PLS, which usually affects adults during 
midlife. The causes of PLS are unknown and the disease currently has no 
cure. However, some individuals with PLS can increase their comfort 
level and ability to function through therapy and treatment. ALS, also 
known as Lou Gehrig's disease, is a fatal motor neuron disease within 
the same family of disorders.
  H. Res. 896 encourages Congress to continue support for further work 
on PLS. It would promote further research into the causes, treatment, 
and eventual cure for PLS, and seek to increase awareness about the 
disease.
  Earlier in the session of the 110th Congress, the House passed H.R. 
2295, the ALS Registry Act, and this bill would help to establish a 
central registry for ALS and other motor neuron disorders like PLS, so 
that research efforts are timely and targeted.
  Finally, this resolution, Mr. Speaker, recognizes those who have 
already made efforts to support individuals who suffer from PLS. One 
such individual is Hardy L. Brown, co-publisher of the Black Voice 
News, who has personally dedicated himself to raising funds for ALS 
research and has now been diagnosed with PLS himself.
  I would like to thank my colleague, Representative Baca, for his hard 
work in bringing this resolution before us today, and I urge my 
colleagues to join me in support of H. Res. 896.
  Mr. Speaker, I reserve the balance of my time.
  Mr. TERRY. Mr. Speaker, I too rise in support of House Resolution 
896, recognizing February of 2009 as Primary Lateral Sclerosis 
Awareness Month. I also wish to thank Mr. Baca for authoring this 
resolution.
  While primary lateral sclerosis is not fatal, there is no cure, and 
the progression of symptoms varies. Some Americans affected by this 
disease may retain the ability to walk without assistance, but others 
eventually require wheelchairs, canes, or other assistive devices that 
limit their mobility.
  Because primary lateral sclerosis is such a rare neuromuscular 
disease, its diagnosis is often delayed because of its resemblance to 
ALS, or better known as Lou Gehrig's disease. In PLS, there is no 
evidence of the degeneration of spinal motor neurons or muscle wasting 
that occurs in ALS, and it is characterized by progressive muscle 
weakness in the voluntary muscles. PLS belongs to a group of disorders 
known as motor neuron diseases that develop when the nerve cells that 
control voluntary muscle movement degenerate and die. This usually 
occurs after the age of 50, and causes a gradual weakness in the 
muscles.
  Symptoms for the individuals afflicted by the disease may include 
difficulty with balance, weakness and stiffness in the legs, and 
clumsiness. Other symptoms may include sudden and involuntary muscle 
spasms in the hands, feet, or legs, and maybe speech problems due to 
the involvement of the facial muscles. The disease, which scientists 
believe is not hereditary, progresses gradually over a number of years 
or even decades.
  The efforts of the Spastic Paraplegia Foundation have been paramount 
in raising funds dedicated to finding cures and providing information 
about PLS. Thanks to the dedication and hard work of many individuals 
at the Spastic Paraplegic Foundation, in just 5 years, more than $1 
million has been targeted to research on SPF conditions and thousands 
of people have been helped.
  I would like to thank the National Institute of Neurological 
Disorders and Stroke at the National Institute of Health for conducting 
a broad range of research on neuromuscular disorders such as PLS. Their 
research has been aimed at developing techniques to diagnose, treat, 
prevent, and ultimately cure these devastating diseases.
  In closing, I would like to thank again the author of this 
resolution, Mr. Joe Baca, my friend from California, for raising public 
awareness about PLS. I encourage all of my colleagues to vote in favor 
of this resolution.
  I reserve the balance of my time.
  Mr. PALLONE. Mr. Speaker, I am pleased to yield 5 minutes to the 
gentleman from California (Mr. Baca), who is the author of this 
resolution.
  Mr. BACA. Mr. Speaker, I rise in support of H. Res. 896, the Primary 
Lateral Sclerosis Awareness Month Act. I would like to thank Chairman 
Dingell, Chairman Pallone, Ranking Member Nathan Deal, along with Mr. 
Terry, for helping guide this legislation through the committee.
  Primary lateral sclerosis, commonly referred to as PLS, is a 
neurological disorder that affects the cells that control the voluntary 
muscles. PLS is similar to ALS, often called Lou Gehrig's disease.
  Can you imagine someone who is diagnosed with PLS, but yet they are 
told that it is ALS and in fact it was PLS that they were diagnosed, 
and thinking that they only had X amount of time to live, its impact it 
has on the family members and others as they begin to look at that 
disease because not enough research has been done? That is devastating 
to the individuals and the family members who are diagnosed. That is 
why it is important that we do the research.
  This illness is, of course, named after the famous Yankee baseball 
player who suffered and died of ALS before we knew much about it. As 
with many other neurological disorders, once the nerve cells that 
control the voluntary muscles are affected, a person's physical ability 
to function becomes very difficult.
  Symptoms of PLS include difficulties with balance, sudden involuntary 
muscle spasms in the hands, feet, legs, and speech problems when the 
facial muscles are affected. But these symptoms are not unique to PLS 
alone. PLS is often very difficult to diagnose because the symptoms 
vary, and may progress slowly over a period of time of many years. I 
would rather have someone be diagnosed with the right PLS versus ALS to 
know that they are going to live a lot longer.
  Because of this, many Americans are still unaware of the severe 
nature of

[[Page 17282]]

PLS, even though the disorder was first discovered in 1850 in France. 
That is why we need to continue with greater and more expansive 
research.
  My resolution serves to raise awareness across the Nation by urging 
all Americans to recognize February of 2009 as PLS Awareness Month. 
This resolution emphasizes the need of greater funding and more 
research to combat neuromuscular disease. With this bill, Congress is 
helping educate our doctors and nurses and the rest of the medical 
community about PLS.
  However, there are many courageous and dedicated individuals who are 
doing this already.
  One is my good friend, Hardy Brown, who is from my district and, of 
course, owner of the Black Voice Newspaper in California. He has 
dedicated his life to serve as a voice for underrepresented communities 
in the Inland Empire. Throughout his life, Hardy Brown has done a 
tremendous job in the community raising awareness of Lou Gehrig's 
disease. Now he is diagnosed with PLS. Hardy Brown, once a vibrant, 
active leader, is now in a wheelchair doing what he can despite 
difficulties moving, speaking, and typing.
  Another individual, Tyonja Bathgate from Maryland, whose husband was 
diagnosed with PLS, has torn herself from her husband's bedside to 
advocate on behalf of this issue.
  We want to thank these individuals and all others who have worked to 
raise the awareness of these conditions. But we must do more, and 
urging the establishment of a PLS Awareness Month is a step in the 
right direction. There is currently no cure for PLS, and hopefully one 
day we will find a cure. God willing, we will do that.
  Treatment and symptoms vary from person to person, and the age of 
onset is generally between the ages of 35 to 66, and, as it was stated, 
over 2,000 have been diagnosed with this.

                              {time}  1530

  Because of the similar symptoms, researchers believe that PLS 
patients are often diagnosed with ALS, and I have already stated the 
effects it has on families when they are told that.
  Most of us have heard of Lou Gehrig's disease, but this legislation 
today will help raise the awareness and stress the importance of a very 
familiar disorder. The medical community must be able to properly 
diagnose those individuals who suffer from PLS and other neuromuscular 
disease to ensure proper care and treatment.
  I urge my colleagues to vote for H. Res. 896, and join me and all 
individuals and organizations in this effort to fight this devastating 
illness. And I want to thank again Mr. Pallone, Mr. Terry for helping 
us with this legislation and many of the others that will support this 
to make sure that not many other individuals suffer from this type of 
disease that will affect others as well.
  Mr. TERRY. We have no further speakers, so I will just once again 
thank Mr. Baca for writing this resolution and bringing it, Mr. 
Pallone, Mr. Dingell, Mr. Barton for making sure that it, in such a 
speedy manner, got to the House floor.
  I yield back.
  Mr. PALLONE. Mr. Speaker, I have no further requests for time as 
well, and I yield back the balance of my time and urge support for the 
bill.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from New Jersey (Mr. Pallone) that the House suspend the 
rules and agree to the resolution, H. Res. 896, as amended.
  The question was taken; and (two-thirds being in the affirmative) the 
rules were suspended and the resolution, as amended, was agreed to.
  The title was amended so as to read:
  ``A resolution recognizing the need to pursue research into the 
causes, a treatment, and an eventual cure for primary lateral 
sclerosis, supporting the goals and ideals of Primary Lateral Sclerosis 
Awareness Month, and for other purposes.''.
  A motion to reconsider was laid on the table.

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