We are removing Christmas from the house today and pack it all back up into the attic for another year.
As you know, I love the people at the Coalition for Pulmonary Fibrosis. We met the founders many years ago at a seminar on lung disease and transplants. I received an e-mail yesterday dedicated to their year in review. Blogging it today seems like a good way to begin 2013. It is hopeful and forward looking as are we, dear reader. Happy New Year!
Coalition for Pulmonary Fibrosis Announces 2012 Accomplishments in Research, Advocacy, Awareness Efforts
Supports Patients and Efforts for Cure for Deadly Lung Disease
The Coalition for Pulmonary Fibrosis (CPF) announced today its accomplishments for the year, reflecting on the successes in Pulmonary Fibrosis (PF) research, advocacy and awareness efforts.
"We are pleased to say that 2012 was a good year for the foundation and for our patients as we inch closer to treatments and a cure," said Mishka Michon , Chief Executive Officer of the Coalition for Pulmonary Fibrosis. "We made progress in each of our focus areas and look forward to further progress in 2013."
Research
The CPF continued to fund its partnership grant with the American Thoracic Society (ATS), a program that has awarded two-year funding to eight researchers whose projects were judged the most promising in the field by a peer advisory review board. For the fifth year, the CPF supported the genetic counseling program for familial PF at National Jewish Health - a program that provides cost-free information and support to families where PF is a known risk.
The CPF announced a strategic alliance with the Westie Foundation of America (WFA) to fight PF, a disease that claims as many human lives as breast cancer each year and a similar percentage of West Highland Terriers, it is believed, as well The WFA is a canine health organization focused on the health of West Highland Terriers or "Westies".
The organization supported the first Fibrosis Across Organs meeting convened earlier in the year by the ATS that promises to move the science forward faster by encouraging collaborations amongst scientists across organ areas in the study of fibrotic diseases including those of the lung, heart, liver, kidney and skin.
The CPF also participated in a key strategic planning meeting held by the Department of Health & Human Services at the NIH and National Heart, Lung, Blood Institute, the first of its kind in more than a decade. The meeting included key researchers and thought leaders and will set the stage for NIH's research priorities in PF over the next decade and beyond.
Advocacy
PF Month Activities:
In its advocacy efforts, the CPF expanded its usual National Pulmonary Fibrosis Awareness Week to an entire month for the month of September. The CPF and a team of patient advocates met on Capitol Hill with Members of the House and Senate to ask for support of PF legislation – the Pulmonary Fibrosis Research Enhancement Act. In support of the legislative efforts, the organization collected patient and patient advocate signatures on a petition that was shared with Members of Congress – obtaining 5,000 signatures to date. To sign the petition, go to: http://cpf.convio.net/site/Survey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=1621.
As part of National PF Month, the CPF joined with the ATS to promote "PF Week at the American Thoracic Society". The two organizations co-hosted a public webinar with record attendance from around the world, with guest hosts Dr. James Kiley and Dr.Jerry Eu of the Lung Division of the National Heart, Lung, Blood Institute at the National Institutes of Health (NIH), and Dr. Gregory Cosgrove , a pulmonologist and PF researcher at National Jewish Health in Denver, CO. The archive of the webinar is at:http://patients.thoracic.org/lung-disease-week/pulmonary-fibrosis-2012/webinar.php.
The NIH helped promote National PF Month on its website and with a radio interview broadcast nationwide. The archive may be found at:
Speaking Out and Speaking Up
The Coalition for Pulmonary Fibrosis (CPF) spoke out for the more than 128,000 people suffering from Pulmonary Fibrosis (PF) and their families at forums that asked for patient comment on efforts related to drug development and research. The efforts were with the Food and Drug Administration's (FDA) new congressionally mandated Patient-Focused Drug Development program and the congressionally authorized Patient-Centered Outcomes Research Institute (PCORI). The CPF attended meetings at the FDA that were held to allow patient input on the drug development process per the patient focused program. The FDA set a preliminary list of diseases that range in severity from non-life threatening conditions to deadly ones.
Though PF has no approved therapies and is imminently deadly, it was not included in the preliminary list. CPF patients and members sent more than 1,800 letters to the FDA's Commissioner, Margaret Hamburg , on the issue. The CPF's efforts were supported by a letter submitted to the FDA by Senator Christopher Coons (D-DE) and Congressman Erik Paulsen (R-MN). The CPF and its members also spoke out against major cuts currently threatening the NIH, the Centers for Disease Control and other agencies working to treat and cure patients with PF and other deadly diseases.
Awareness
In 2012, the CPF celebrated key accomplishments including growth in its event fundraising efforts – expanding its number of local events aimed at raising awareness and funding. Events were held nationwide during the year, including ones in New York City, NY, Washington, DC, Franklin, TN, Largo, FL, Columbia, SC, Pittsburgh, PA,Atlanta, GA, Brookline, MA, Portland, ME, Orange County, CA, Burlington, NC and St. Johns, Virgin Islands, as well as other cities. Due, in part, to growth in its popularDaughters of PF program, the increase allowed the CPF to see an expansion in its overall efforts.
CPF patient education efforts included three patient events in which it partnered with The Mayo Clinic and Shands Medical Center in Jacksonville, FL, University of South Carolina in Columbia, SC, and the Boston IPF Collaborative (pulmonary divisions of Beth Israel Deaconess Medical Center, Massachusetts General Hospital, St. Elizabeth's Medical Center and Brigham and Women's Hospital) in Boston, MA to educate and inform hundreds of patients and families fighting PF.
Also, the CPF's publicity efforts were increased through the help of Actress Rose McGowan who is Chair of the CPF's Daughters of PF program and ambassador of the CPF. She lost her father to PF and vowed to raise awareness and support funding efforts to find a cure. McGowan appeared in national television coverage on CBS, Fox and other broadcast media as well as promoted the CPF's efforts with her social media outreach on Facebook and Twitter. McGowan's December 14th appearance on CBS TV'sThe Doctors is archived and may be viewed at:https://coalitionforpf.org/cpf_events_detailes.php?id=598. She also appeared on Fox TV in Los Angeles. Click here to view segment. http://www.myfoxla.com/video?clipId=7809247&autostart=true
The CPF is appreciative of the education and awareness grants provided by Boehringer-Ingelheim and InterMune.
CPF Announced Awards and Appointment
The CPF awarded winners of its three annual awards for distinguished service in research, humanitarian and advocacy efforts. This year's recipients were SenatorChristopher Coons (D-DE), lead sponsor of PF legislation in the U.S. Senate and an outspoken supporter of PF patients, renowned PF researcher Andrew Tager , MD, of Massachusetts General Hospital and advocate and fundraiser, Tami Rippy .
The award to Dr. Tager included a $15,000 grant for his continued efforts in PF research.
The CPF appointed a new board member in 2012. Michael Holling , managing director and head of commercial real estate syndications for Associated Bank, has 25 years of capital markets experience, including senior positions at US Bank, JP Morgan, and Banc of America Securities, with specializations in commercial real estate finance, loan syndications, and mezzanine financing.
The Coalition for Pulmonary Fibrosis works on a national scale to support research for a cure and to assist patients. For information or to support this important work, please contact the CPF at 1-888-222-8541, or visit www.coalitionforpf.org or visit us on Facebook or Twitter.
About Pulmonary Fibrosis (PF)
Pulmonary Fibrosis (PF) 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 PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis. Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).
About the CPF
The CPF is a 501C(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), 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 PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF 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 26,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.
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