The following press release came up this morning on my Google alerts. I thought many fellow HPS'ers, especially those of you that are so good about writing your Congressional reps, would be interested. For some of the newbies, this bill calls for idiopathic pulmonary fibrosis research. The pulmonary fibrosis of HPS is not idiopathic. Idiopathic simply means that the cause is unknown, and we know that HPS genes types 1 and 4 do cause fibrosis. But, just as our HPS research can benefit people with pulmonary fibrosis from all sorts of factors, we can also benefit from IPF research. Thus, we can also benefit from this advocacy work.
Resolution Recognizing IPF Challenges Introduced in 110th Congress
Legislation formally calls for research into treatment, cure for
devastating lung disease
WASHINGTON, July 18 /PRNewswire-USNewswire/ -- The Coalition for
Pulmonary Fibrosis (CPF) announced today important legislation that
recognizes the need for research into the cause of idiopathic pulmonary
fibrosis (IPF), a deadly lung disease with no known cause, no FDA-approved
treatment, or cure. House Concurrent Resolution 182 (H. Con. Res. 182)
raises the importance of the urgent need to identify viable treatments and
an eventual cure for IPF, a disease that is becoming alarmingly more
prevalent in the United States.
"Congress passing this legislation will be a tremendous benchmark for
the IPF community," said Mark Shreve, chief executive officer of the
Coalition for Pulmonary Fibrosis. "Central to the CPF's mission is to
advocate on behalf of all Americans fighting IPF and forge partnerships in
Congress to advance legislation important to the IPF community. This
resolution is particularly gratifying because it reaffirms that our
advocates around the country are being heard in Congress."
The concurrent resolution was introduced by U.S. Rep. Nathan Deal
(R-GA) further affirming Congress' support for the goals and ideals of
National IPF Awareness Week, sponsored by the CPF and scheduled to take
place Sept. 22-29, 2007 in Washington, D.C. The resolution already has the
support of six House co-sponsors. The Senate version authored by Sen. Norm
Coleman (R-MN) is expected to be introduced in the coming weeks.
The legislation represents an important step for the IPF cause for
several reasons:
-- It advocates for patients who suffer from IPF. In the past five years,
IPF prevalence and incidence has increased 156 percent; yet there
remains no FDA approved treatment to combat this deadly disease, and
research funding remains unacceptably low
-- It creates the foundation on which all future legislation involving IPF
may be based
-- It defines the challenges facing the IPF community in the Congressional
Record
-- It becomes a permanent vehicle for educating Members of Congress
-- It will lead to greater public awareness of IPF
-- It will initiate a dialog in Congress to increase attention and funding
given to the deadly disease that kills 40,000 Americans each year, as
many as claimed by breast cancer
"By introducing H. Con. Res. 182 in honor of my dear friend Charlie
Norwood, I hope to continue his efforts to raise awareness of this
debilitating lung disorder which struck him in 1998. I urge the adoption of
this resolution to promote finding a cure for the more than 128,000
Americans who suffer from this disease," said Rep. Deal.
The late Rep. Charlie Norwood (R-GA) was a proponent of increased
awareness of IPF following his own struggle with the disease. He championed
the cause on behalf of the 128,000 Americans who suffer from IPF until his
untimely death in February 2007. Rep. Norwood received a lung transplant in
2004 and subsequently introduced House Concurrent Resolution 178 for the
first time in the 109th Congress. Rep. Deal committed to introduce the
legislation again this year, in an effort to bring attention to the disease
while also honoring Congressman Norwood's work.
"Pulmonary fibrosis is an often overlooked degenerative and
debilitating disease," said original co-sponsor, U.S. Rep. Brian Baird. "My
own father died of this disease, and my good friend and colleague Charlie
Norwood died just a few months ago. It is my hope that with passage of this
resolution we can increase awareness about this disease. We must
aggressively pursue research opportunities into the causes of the disease,
a treatment, and eventual cure."
"It is important that our patients, their families, and IPF advocates
voice their support for this important legislation. We urge them to show
their support for the resolution by making phone calls to their members of
Congress, by writing letters and emails, and by making personal visits to
their Members' district offices before the planned August 3 Congressional
recess," said Shreve.
To view the resolutions, including current co-sponsors, go to
http://www.thomas.loc.gov and enter "H. CON. RES. 182." If you would like
to send a letter to your representative to encourage them to co-sponsor the
legislation, visit the CPF Web site at http://www.coalitionforpf.org for a
sample letter.
What is a Concurrent Resolution?
Concurrent Resolutions are used for expressing facts, principles,
opinions, and purposes of the two Houses of Congress -- the House of
Representatives and the Senate. On approval by both Houses, they are signed
by the Clerk of the House and the Secretary of the Senate and transmitted
to the Archivist of the United States for publication in a special part of
the Statutes at Large volume covering that session of Congress.
About Idiopathic Pulmonary Fibrosis (IPF)
IPF is a lung disorder characterized by a progressive scarring -- known
as fibrosis -- and deterioration of the lungs, which slowly robs its
victims of their ability to breathe. Approximately 128,000 Americans suffer
from IPF, and there is currently no known cause or cure. An estimated
48,000 new cases are diagnosed each year. IPF is difficult to diagnose and
an estimated two- thirds of patients die within five years of diagnosis.
About the Coalition for Pulmonary Fibrosis
The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit
organization, founded in 2001 to accelerate research efforts leading to a
cure for idiopathic pulmonary fibrosis (IPF), while educating, supporting,
and advocating for the community of patients, families, and medical
professionals fighting this disease. The CPF funds promising research into
new approaches to treat and cure pulmonary fibrosis; provides patients and
families with comprehensive education materials, resources, and hope;
serves as a voice for national advocacy of IPF issues; and works to improve
awareness of IPF in the medical community as well as the general public.
The CPF's nonprofit partners include many of the most respected medical
centers and healthcare organizations in the U.S. With more than 13,000
members nationwide, the CPF is the largest nonprofit organization in the
U.S. dedicated to advocating for those with pulmonary fibrosis. For more
information please visit http://www.coalitionforpf.org or call (888)
222-8541.
Resolution Recognizing IPF Challenges Introduced in 110th Congress
Legislation formally calls for research into treatment, cure for
devastating lung disease
WASHINGTON, July 18 /PRNewswire-USNewswire/ -- The Coalition for
Pulmonary Fibrosis (CPF) announced today important legislation that
recognizes the need for research into the cause of idiopathic pulmonary
fibrosis (IPF), a deadly lung disease with no known cause, no FDA-approved
treatment, or cure. House Concurrent Resolution 182 (H. Con. Res. 182)
raises the importance of the urgent need to identify viable treatments and
an eventual cure for IPF, a disease that is becoming alarmingly more
prevalent in the United States.
"Congress passing this legislation will be a tremendous benchmark for
the IPF community," said Mark Shreve, chief executive officer of the
Coalition for Pulmonary Fibrosis. "Central to the CPF's mission is to
advocate on behalf of all Americans fighting IPF and forge partnerships in
Congress to advance legislation important to the IPF community. This
resolution is particularly gratifying because it reaffirms that our
advocates around the country are being heard in Congress."
The concurrent resolution was introduced by U.S. Rep. Nathan Deal
(R-GA) further affirming Congress' support for the goals and ideals of
National IPF Awareness Week, sponsored by the CPF and scheduled to take
place Sept. 22-29, 2007 in Washington, D.C. The resolution already has the
support of six House co-sponsors. The Senate version authored by Sen. Norm
Coleman (R-MN) is expected to be introduced in the coming weeks.
The legislation represents an important step for the IPF cause for
several reasons:
-- It advocates for patients who suffer from IPF. In the past five years,
IPF prevalence and incidence has increased 156 percent; yet there
remains no FDA approved treatment to combat this deadly disease, and
research funding remains unacceptably low
-- It creates the foundation on which all future legislation involving IPF
may be based
-- It defines the challenges facing the IPF community in the Congressional
Record
-- It becomes a permanent vehicle for educating Members of Congress
-- It will lead to greater public awareness of IPF
-- It will initiate a dialog in Congress to increase attention and funding
given to the deadly disease that kills 40,000 Americans each year, as
many as claimed by breast cancer
"By introducing H. Con. Res. 182 in honor of my dear friend Charlie
Norwood, I hope to continue his efforts to raise awareness of this
debilitating lung disorder which struck him in 1998. I urge the adoption of
this resolution to promote finding a cure for the more than 128,000
Americans who suffer from this disease," said Rep. Deal.
The late Rep. Charlie Norwood (R-GA) was a proponent of increased
awareness of IPF following his own struggle with the disease. He championed
the cause on behalf of the 128,000 Americans who suffer from IPF until his
untimely death in February 2007. Rep. Norwood received a lung transplant in
2004 and subsequently introduced House Concurrent Resolution 178 for the
first time in the 109th Congress. Rep. Deal committed to introduce the
legislation again this year, in an effort to bring attention to the disease
while also honoring Congressman Norwood's work.
"Pulmonary fibrosis is an often overlooked degenerative and
debilitating disease," said original co-sponsor, U.S. Rep. Brian Baird. "My
own father died of this disease, and my good friend and colleague Charlie
Norwood died just a few months ago. It is my hope that with passage of this
resolution we can increase awareness about this disease. We must
aggressively pursue research opportunities into the causes of the disease,
a treatment, and eventual cure."
"It is important that our patients, their families, and IPF advocates
voice their support for this important legislation. We urge them to show
their support for the resolution by making phone calls to their members of
Congress, by writing letters and emails, and by making personal visits to
their Members' district offices before the planned August 3 Congressional
recess," said Shreve.
To view the resolutions, including current co-sponsors, go to
http://www.thomas.loc.gov and enter "H. CON. RES. 182." If you would like
to send a letter to your representative to encourage them to co-sponsor the
legislation, visit the CPF Web site at http://www.coalitionforpf.org for a
sample letter.
What is a Concurrent Resolution?
Concurrent Resolutions are used for expressing facts, principles,
opinions, and purposes of the two Houses of Congress -- the House of
Representatives and the Senate. On approval by both Houses, they are signed
by the Clerk of the House and the Secretary of the Senate and transmitted
to the Archivist of the United States for publication in a special part of
the Statutes at Large volume covering that session of Congress.
About Idiopathic Pulmonary Fibrosis (IPF)
IPF is a lung disorder characterized by a progressive scarring -- known
as fibrosis -- and deterioration of the lungs, which slowly robs its
victims of their ability to breathe. Approximately 128,000 Americans suffer
from IPF, and there is currently no known cause or cure. An estimated
48,000 new cases are diagnosed each year. IPF is difficult to diagnose and
an estimated two- thirds of patients die within five years of diagnosis.
About the Coalition for Pulmonary Fibrosis
The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit
organization, founded in 2001 to accelerate research efforts leading to a
cure for idiopathic pulmonary fibrosis (IPF), while educating, supporting,
and advocating for the community of patients, families, and medical
professionals fighting this disease. The CPF funds promising research into
new approaches to treat and cure pulmonary fibrosis; provides patients and
families with comprehensive education materials, resources, and hope;
serves as a voice for national advocacy of IPF issues; and works to improve
awareness of IPF in the medical community as well as the general public.
The CPF's nonprofit partners include many of the most respected medical
centers and healthcare organizations in the U.S. With more than 13,000
members nationwide, the CPF is the largest nonprofit organization in the
U.S. dedicated to advocating for those with pulmonary fibrosis. For more
information please visit http://www.coalitionforpf.org or call (888)
222-8541.
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