Monday, September 26, 2011

News About Congress from the Coalition for Pulmonary Fibrosis

I received the below e-mail from the wonderful people at the Coalition for Pulmonary Fibrosis. They have brought the disease to the forefront on a National level. They have also funded major specific research regarding pulmonary fibrosis.


Here is the e-mail:
“As you know, this week is National Pulmonary Fibrosis Awareness Week and the Coalition for Pulmonary Fibrosis (CPF) held 70 meetings on Capitol Hill in Washington on your behalf with your fellow patients and advocates earlier this week. 
We need your help NOW to get your members of Congress (U.S. House of Representatives and U.S. Senate) on board with the Pulmonary Fibrosis Research Enhancement Act (H.R. 2505 and S. 1350).  Members respond to local requests from their constituents before signing on to national legislation, like the PF bill.  So, let them know now that YOU support it!
Our champion in the U.S. House of Representatives, Rep. Erik Paulsen, spoke on the House floor this week and asked his fellow members of Congress to sign onto the Pulmonary Fibrosis Research Enhancement Act.  YOU can make sure your member does it just by emailing or calling their district or DC office to let them know the bill is important to you and your family!  Here is a link to the short video of Rep. Paulsen speaking about the bill: http://www.youtube.com/watch?v=tXxICKCjxn0&feature=channel_video_title
Also, Rep. Paulsen and our champion in the Senate, Sen. Chris Coons, sent out "dear colleague" letters this week asking their fellow members of Congress to support the bill now.  Your call or email as a constituent will help drive that message home - please call or email them now!  Simply click here to send a note now!
Here's What you can do NOW:
1.  Call or email your Member of Congress and the Senate now (there is an easy-to-use link to this email) and ask them to support the Pulmonary Fibrosis Research Enhancement Act NOW!  Just click here to send a note:
2.  See the video link from Rep. Paulsen's short speech and then post it to your "status" on Facebook, LinkedIn, Twitter or any other social networking site you use.  Just copy and paste this into your status: http://www.youtube.com/watch?v=tXxICKCjxn0&feature=channel_video_title
Below is a press release we sent out this week about efforts on Capitol Hill this week.  Please share it, too!
Sincerely,
Mishka Michon, CPF CEO
LATE PATIENT’S HUSBAND, FELLOW ADVOCATES ASK CONGRESS FOR HELP FOR LETHAL LUNG DISEASE
Ninth Annual National Pulmonary Fibrosis Awareness Week Sept. 18-24
 
Culver City, Calif./ September 19, 2011– Doris Lowenthal planned to be on Capitol Hill this week. As a member of the Coalition for Pulmonary Fibrosis’ (CPF) Pulmonary Fibrosis (PF) Awareness Week volunteer team, she was scheduled for more than 60 meetings with members of Congress and staff members.  She prepared just what she wanted to say to them to gain their compassion and their co-sponsorship of a bill that had the potential to save her life and those of thousands of others.  Doris died just weeks ago before she could deliver the message herself.  Instead, her husband, Barry, and her fellow Pulmonary Fibrosis (PF) advocates will share her story along with their own as they canvas Capitol Hill this week during the ninth annual National Pulmonary Fibrosis Awareness Week through the 24th. 
Doris was a two-time breast cancer survivor, but nothing could stop the lethal disease that ravaged and destroyed her once healthy lungs.  She received a single lung transplant several years ago in hopes that she’d live a somewhat normal life and could remain active in the fight to find treatments and a cure for the disease that claims as many lives each year, ironically, as breast cancer (40,000) and affects a known 128,000 Americans.  Weeks ago, Doris, a Mary Kay independent consultant, was flying from her home in Maryland to Dallas, Texas when she became so ill that the pilots were forced to make an emergency landing in Memphis, Tennessee. 
The ensuing weeks were difficult on Doris, but she remained upbeat and positive, and assured her friends and family that she’d be out of the ICU and on Capitol Hill again in this year.  She lost her fight on August 14 to the disease that has no FDA approved treatment and no cure. 
“I am here this week for Doris,” said Barry Lowenthal.  “She was so passionate about finding a treatment and a cure for PF so that others wouldn’t have to go through what she did.  I will do everything I can to continue this fight for her and each step I take, she’ll be with me.”
The primary goals of this year’s activity are to ensure passage of the Pulmonary Fibrosis Research Enhancement Act (PFREA, H.R. 2505, S. 1350) in the Senate and the House, and to raise awareness of Pulmonary Fibrosis issues in communities nationwide.
This year marks the CPF’s ninth visit to Capitol Hill, and a new alliance with Congressmen Erik Paulsen (R-MN) and Congresswoman Tammy Baldwin (D-WI) as well as Senator Chris Coons (D-DE) and Senator Mark Kirk (R-IL) to reintroduce the PFREA  in the 112th Congress.   This historic, bi-partisan legislation would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.  The Pulmonary Fibrosis Foundation (PFF), in demonstration of its support for the PFREA, will be joining the CPF for the Hill meetings.
“We are inspired by the strength and courage of our patients and family members,” said Mishka Michon, chief executive officer of the CPF.   “Having the voice of the patient community heard loud and clear will make things happen to bring attention and awareness to PF in Washington and beyond.”
“The PFF joins in thanking the volunteers who travel to Capitol Hill each year to request the support of our legislators as we seek to find answers to PF.  It is our hope that this effort will help us move closer to answers to this disease,” said Patti Tuomey, chief operating officer for the PFF.
The progression from a bill of recognition of the disease, H. Con Res 182, which was passed in 2007 to a bill establishing funding for PF research, is indicative of increased responsiveness on the part of Congress. Over the past nine years, the CPF and its advocates have met with hundreds of Members of Congress.
PF patients, families and those affected by PF can help with 2011 awareness efforts and help gain passage of the PFREA by joining the CPF’s advocacy campaign, Campaign ACT. For further information, visit the CPF at www.coalitionforpf.org, call 888-222-8541, or email info@coalitionforpf.org.”

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