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17 Cosponsors
as of March 26, 2010
Background
On February 3rd, Congressman Joe Baca (D-CA) introduced
HR 804, a bill
that seeks to increase funding for research into Primary Lateral Sclerosis
(PLS). The bill would amend the Public Health Service Act to require the
expansion, intensification, and coordination of research and other activities of
the National Institutes of Health with respect to PLS.
Read about our recent meeting with Congressional members on HR 804.
In his press release at the introduction of the bill, Congressman Baca noted
that “Every year, thousands of Americans and their families must deal with the
devastating effects of PLS. It is critical we have both greater research and
awareness into PLS and other neuro-muscular diseases. I am proud to introduce
this needed legislation, and will continue to work so the public and medical
community is better informed of this debilitating illness.”
Information on the bill is readily available by going to “thomas.loc.gov” and in
the center of the screen where it says “Search Bill Summary and Status” entering
“HR 804” then selecting the option for “Bill Number” immediately below and then
clicking “Search.” This will bring up the most up-to-date information on the
bill, including the full text, major actions including committee referrals or
mark ups and even a list of current co-sponsors.
Contacting Congress
We strongly
encourage SPF members, patients, friends and family members to contact their
representatives in Congress to support this bill.
At this point in the legislative process, we are seeking different support from
Representatives and Senators because there is not yet a Senate companion bill,
but everyone interested in this important issue should contact both their local
House Member and their two Senators.
Finding Your Elected
Officials
If you are
not sure who your elected representatives are, there is a simple way to find
out. Go to www.congress.org. Near the top
of the page on the right side it says “Find Your Officials” and there is a text
box. Enter your zip code in the box and click “go.” In some cases a
Congressional district bisects a 5-digit zip code so you may have to enter your
full 9-digit zip code.
The results page will show federal officials in a column on the left and local
and state officials on the right. By clicking on the names of your Senators and
House Member you can bring up biographical information, recent news stories and
contact information that you should use to address your letters.
We are asking that each of you write to both of your Senators and to your Member
of the House of Representatives. If you would like to write to other Members of
the House from your state, please feel free, but be aware that some Members will
only respond to letters from their own constituents.
A Note on Form
Letters
Members of Congress receive hundreds or even thousands of letters a week from
constituents. When form letters arrive in a Congressional office they are
usually reviewed by an intern or staff assistant and then assigned a code that
generates an automatic form letter response.
Don’t write a form letter.
While we are providing a sample letter, please take the time to write your own
letter, using what we have here as a guide. Your personal stories and
experiences are important. Share them. Be as personal as you feel comfortable.
And remember that each of these Senators and House Members owe their current
position to the people who elected them. They work for you.
For Members of the
House of Representatives
{DATE}
The Honorable {First Name} {Last Name}
United States House of Representatives
Washington, DC 20515
Dear Representative {Last Name},
I am writing to request that you cosponsor HR 804, The Understanding and
Research of PLS Act, introduced by Congressman Joe Baca (D-CA). This legislation
is urgently needed to increase studies into the rare neuromuscular disorder
Primary Lateral Sclerosis (PLS).
PLS is characterized by progressive muscle spasticity and weakness in the
voluntary muscles. It is a particularly cruel disease that destroys a person’s
ability to control normal muscle movements such as those required to walk and
talk. 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. More information can
be found on the Spastic Paraplegia Foundation website -
http://www.sp-foundation.org.
Currently there is no cure for PLS or a way to slow or reverse the progressive
disability of this disorder. As is the case with many rare diseases, they are
often overlooked in the media and by the medical and research communities. And,
with no known public figure/celebrity spokesperson who is afflicted with this
disease, the people suffering from PLS have even less of a public platform.
Luckily, this began to change with the establishment of the Spastic Paraplegia
Foundation (SPF) in 2002. Thanks to SPF’s all-volunteer efforts, in seven short
years, over $2 million has been raised to support critical research on PLS, as
well as another neuromuscular disorder with similar symptoms, Hereditary Spastic
Paraplegia (HSP).
Establishing a fund will provide desperately needed resources in our search for
a cure.
I urge you to become a cosponsor of this important bill. Please contact Brenda
Villanueva in Congressman Joe Baca's office (202-225-6161) to become a cosponsor
of the Understanding and Research of PLS Act, HR 804.
Thank you in advance for your support and please do not hesitate to contact me
at any time with any questions you may have.
Sincerely,
{Your Signature}
{First Name} {Last Name}
{Mailing Address}
{City, State Zip}
FOR MEMBERS OF THE SENATE
{DATE}
The Honorable {First Name} {Last Name}
United States Senate
Washington, DC 20510
Dear Senator {Last Name},
I am writing to ask for your support in combating Primary Lateral Sclerosis
(PLS) and specifically to assist the Spastic Paraplegia Foundation with
legislation to combat PLS.
PLS is characterized by progressive muscle spasticity and weakness in the
voluntary muscles. It is a particularly cruel disease that destroys a person’s
ability to control normal muscle movements such as those required to walk and
talk. 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. More information can
be found on the Spastic Paraplegia Foundation website -
http://www.sp-foundation.org.
Currently there is no cure for PLS or a way to slow or reverse the progressive
disability of this disorder. As is the case with many rare diseases, they are
often overlooked in the media and by the medical and research communities. And,
with no known public figure/celebrity spokesperson who is afflicted with this
disease, the people suffering from PLS have even less of a public platform.
Luckily, this began to change with the establishment of the Spastic Paraplegia
Foundation (SPF) in 2002. Thanks to SPF’s all-volunteer efforts, in seven short
years, over $2 million has been raised to support critical research on PLS, as
well as another neuromuscular disorder with similar symptoms, Hereditary Spastic
Paraplegia (HSP).
On February 3rd, Congressman Joe Baca introduced HR 804, The Understanding and
Research of PLS Act. This legislation is urgently needed to increase studies
into the rare neuromuscular disorder PLS. Currently there is no Senate companion
bill. I would like to ask you to consider sponsorship of this worthy legislation
and would be pleased to offer any assistance you might need to further your
understanding or in the drafting of a bill.
Thank you in advance for your support and please do not hesitate to contact me
at any time with any questions you may have.
Sincerely,
{Your Signature}
{First Name} {Last Name}
{Mailing Address}
{City, State Zip}
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