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| CPF Announces Dates for Seventh Annual National Pumonary Fibrosis Awareness Week |
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| 2009 Awareness Efforts Set for August and September, PF Week Sept. 14 - 21 |
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The Coalition for Pulmonary Fibrosis (CPF) announced it has scheduled its 2009 National Pulmonary Fibrosis (PF) Awareness Week for September 14-21, 2009. The primary goals of this year’s activity are to ensure passage of the PFREA, and raise awareness of PF issues to Members of Congress and in communities nationwide.
Specifically, the CPF is asking its national membership and others affected by PF to take action on the Pulmonary Fibrosis Research Enhancement Act (PFREA), H.R. 1079, by meeting with their Members of Congress in their home districts during the August congressional recess. Following district outreach, the CPF will celebrate National PF Awareness Week September 14-21 and meet with Members who are not yet co-sponsors of the bill.
The CPF has been working closely with Congressman Brian Baird (D-WA) and Congressman Mike Castle (R-DE) on this historic, bi-partisan legislation that 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 PFREA was introduced in the U.S. House of Representatives in February and is expected to soon be introduced in the U.S. Senate.
“We cannot emphasize enough the importance of having patients and their families meet with their Members of Congress. There is no better way to gain support for this cause than to have patients who are affected share their stories with their Member of Congress and ask them, face-to-face for their support of this critical bill to help find answers to this deadly disease,” said Mishka Michon, CPF CEO.
National PF Awareness activities include:
- A Call-to-Action to patients, families, caregivers and all affected by PF to join the CPF’s Campaign ACT advocacy program
- Patient and CPF member in-district meetings, calls and emails to Members of Congress in support of the PFREA
- Local and regional grassroots efforts by patients and CPF members to raise awareness in their local communities by sharing their stories with the local media
- CPF staff meetings on Capitol Hill to fight for passage of the PFREA and raise awareness of PF and the need for increased attention and federal funding for the disease
The CPF has celebrated National PF Awareness Week for the past six years, visiting representatives on Capitol Hill with patients and family members participating and telling their stories. Over the years, the CPF and its advocates have met with hundreds of Members of Congress. As a result of these efforts, the CPF was recognized for its work on behalf of the PF community through the passage H.R. 42, which passed the House unanimously in 2007.
This year, the CPF grassroots campaign with in-district visits is expected to help increase the number of co-sponsors for H.R. 1079. There are currently 32 co-sponsors of the bill.
CPF members and others affected by PF are encouraged to meet with their Members of Congress during the August recess. The U.S. House of Representatives recess is scheduled for August 3rd through September 4th. The U.S. Senate will recess from August 10 through September 7th.
PF patients, families and those affected by PF can help with 2009 Awareness efforts and help gain passage of the PFREA by joining the CPF’s advocacy campaign, Campaign ACT. For further information, call us at 888-222-8541, or email us at info@coalitionforpf.org.
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