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The Coalition for Pulmonary Fibrosis (CPF) wants to share with you news that award-winning TV, Film and Broadway actress Barbara Barrie is helping the CPF increase awareness of Pulmonary Fibrosis. She is a PF patient and is speaking out for the first time.
See the press release below that we sent out today.
Sincerely,
Mishka Michon, CEO, Coalition for Pulmonary Fibrosis
TV, Film, Broadway Actress Barbara Barrie Discloses She Has Incurable Lung Disease Days Ahead of FDA’s First Workshop Focused on Idiopathic Pulmonary Fibrosis
Private Benjamin, Suddenly Susan, Neil Simon’s Prisoner of Second Avenue Actress Speaks Out
New York City, New York. – September 22, 2014, - Actress Barbara Barrie is sharing her story as an Idiopathic Pulmonary Fibrosis (IPF) patient by speaking out for the first time about her diagnosis with the incurable lung disease. Barrie is best known for her on Broadway roles in The Selling of the President, The Prisoner of Second Avenue, California Suite, Torch Song Trilogy and Company, TV roles in Suddenly Susan and Barney Miller and guest star appearances most recently in Nurse Jackie and Law & Order, and film roles in One Potato, Two Potato, Frame of Mind, Hercules and Private Benjamin.
Barrie chose to go public during National PF Awareness Month to help raise visibility of the disease and the efforts of the non-profit organization, the Coalition for Pulmonary Fibrosis. “I have a very full, active life, but what lies ahead is unknown and yet known at the same time,” said Barrie who is one of 200,000 Americans living with the disease. “I am living full steam ahead and am now trying to help other people do the same.”
“There has never been a time when IPF has been at the forefront of science and innovation as it is now and having Barbara’s voice aligned with our efforts is making a huge difference,” said Mishka Michon, CEO of the CPF. “Her attitude is positive and her words are incredibly inspiring.”
Barrie’s announcement comes just days ahead of one of the most important meetings for the disease being held at the U.S. Food and Drug Administration (FDA) on Friday.
The FDA will hold the first IPF Workshop to hear from patients and family members about their experience with the disease. Barrie submitted her written testimony to the FDA in recent weeks. She plans to join the workshop via a webinar from her home in New York City. The FDA is meanwhile reviewing two possible treatments for IPF, InterMune’s pirfenidone and Boehringer Ingelheim’s nintedanib. If approved, they will be the first drugs available for IPF patients in the U.S.
IPF causes progressive and relentless scarring in the lungs and renders them unable to exchange life sustaining blood oxygen. “Idiopathic” means the disease has no known cause. IPF is invariably fatal with a life expectancy of an average three years and claims as many lives each year as breast cancer (40,000). The only known way to survive the disease longer term is by lung transplantation. Less than one percent of the patients receive a transplant.
“Idiopathic pulmonary fibrosis is a devastating disease that does not yet have an FDA-approved treatment, “ said American Thoracic Society Executive Director Steve Crane, PhD, MPH. “Having a star such as Ms. Barrie bring attention to this low-profile but deadly disease by personally disclosing her battle with it will help raise much-needed awareness.”
Public Figures Lost to Pulmonary Fibrosis include: Actor/Singer Robert Goulet, Actor Marlon Brando, Actor Gordon Jump from WKRP in Cincinnati, Actor James Doohan from Star Trek, as well as Jaws Author Peter Benchley, and Stuntman Evel Knievel.
About Barbara Barrie:
Barbara Barrie has had a distinguished career in film, television and theatre. On Broadway, Ms. Barrie has appeared in The Selling of the President, The Prisoner of Second Avenue, California Suite, Torch Song Trilogy, and Company, which garnered her a Tony nomination for Best Performance by an Actress in a Featured Role. She recently appeared Off-Broadway in I Remember Mama, receiving an Outer Critics Circle award nomination for Outstanding Featured Actress in a Play. Other Off-Broadway credits include The Vagina Monologues, Current Events,After-Play, The Crucible, The Beaux’ Stratagem, Love Letters, Isn’t It Romantic? and in The Killdeer, for which she earned an Obie and Drama Desk award for Outstanding Off-Broadway Performance. She has also performed often for both the New York Shakespeare Festival and the American Shakespeare Festival in Stratford, Connecticut.
On television, Ms. Barrie’s appearances on Law and Order and Law and Order: Special Victims Unit, earned her an Emmy award nomination for Outstanding Supporting Actress in a Drama Series and a nomination for Outstanding Guest Actress in a Drama Series, respectively. She earned another Emmy Award nomination for Outstanding Supporting Actress in a Drama Series for her role as ‘Evelyn Stoller’ in Breaking Away. She may be best known to television audiences for her regular role in Suddenly Susan opposite Brooke Shields and her recurring and guest star roles inEnlightened, Nurse Jackie, Once and Again, Barney Miller, Thirtysomething and Family Ties. Additionally, Ms Barrie’s mini-series and television movie credits include Scarlett and Roots: The Next Generation as well as A Chance of Snow, My Left Breast, The Odd Couple: Together Again,Tell Me My Name, To Race the Wind, American Love Affair, and Barefoot in the Park.
Ms. Barrie earned the Best Actress Award in the Cannes Film Festival for her performance in One Potato, Two Potato. For the film Breaking Away, she earned an Academy Award nomination for Best Performance by an Actress in a Supporting Role. Her performance in the award-winning filmJudy Berlin brought her an Independent Spirit Award nomination for Best Supporting Female. Her other film credits include Frame of Mind, Second Best, Hercules, Private Benjamin, The Bell Jar, and Thirty Days.
Ms. Barrie is also the author of two critically acclaimed novels for young adults, Lone Star andAdam Zigzag, as well as a memoir documenting her bout with colon cancer entitled Second Actwhich has been released in its paperback version under the title Don’t Die of Embarrassment: Life After Colostomy and Other Adventures.
Background on FDA IPF Workshop
The FDA is planning to hold the first FDA IPF Workshop where it plans to hear directly from patients, family members and caregivers about their struggles with the disease as well as their feedback and suggestions for improved drug development in the disease. IPF was included as one of the FDA “patient focused drug development program” workshops after the IPF patient community spoke out publicly asking FDA to include the disease and sent 3,000 letters to FDA Commissioner Dr. Margaret Hamburg. The FDA Workshop will take place at the FDA offices in Silver Spring, MD on September 26th.
September -- National Pulmonary Fibrosis Month
All month, the CPF holds national awareness efforts for the 12th year. The CPF and the American Thoracic Society will co-host an awareness week for the disease during PF month, the same week as the FDA hearing (September 21-27) and will co-host a patient event with Johns Hopkins Medical Center on September 27th and the CPF will bring patients and advocates to Capitol Hill on September 25th, as well.
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 200,000 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 28,000 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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