ATLANTA, May 8, 2014 (GLOBE NEWSWIRE) -- Lesley Steinberg dreads Mother's Day. The day of flowers and candy for most of her friends' mothers has been difficult for her since losing her mom to an incurable lung disease in 2011. The Marietta, Georgia woman is turning her grief into action this Mother's Day as she leads a group of hundreds of women who share her experience with Pulmonary Fibrosis (PF) across the United States.
PF is a disease that causes irreversible and relentless scarring in the lungs eventually suffocating its victims in less than three years. The disease has no FDA approved treatment and no cure and as many die each year to PF as to breast cancer. Yet, most Americans have never heard of PF.
Steinberg was recently named a key director of a new program of the Coalition for Pulmonary Fibrosis (CPF) called the Daughters of Pulmonary Fibrosis (PF) in part, due to her personal experience with the disease and her ability to encourage other women going through the same thing to rise above their pain and grief and speak out.
The Chair of the Daughters of PF program is Actress Rose McGowan who lost her father to PF. She has encouraged women nationwide to join her in the effort to raise awareness and funding to fight PF and Steinberg joined the call.
Anyone can join the free Daughters of PF program, just for the asking by emailing the CPF at daughters@coalitionforpf.org or joining the Daughters of PF Facebook page ( https://www.facebook.com/pages/Daughters-of-P...9891389411 ).
Steinberg's mother, Charlotte Griggs, was a vibrant woman in her late 50s when she was stricken with the disease that even she was unfamlilar with despite her background as a nurse.
Despite her continuing grief, Steinberg found herself encouraging others who had parents suffering from the disease and wanted to help change things. She now assists the growing group of women in holding fundraisers and awareness efforts in their local areas to honor their parent suffering from PF or who have lost a parent to it.
As part of her effort, Steinberg helped launch a campaign called "A Daughter's Love" at Valentine's this year. Now to celebrate Mother's Day, she is encouraging Daughters to post photos of their mothers in the center of a heart and posting it to their favorite social media pages and to the CPF's Facebook page and website. She created a video of her mom set to music and has shared it with Daughters as well as family and friends to try and inspire others to develop creative approaches to telling their stories https://www.youtube.com/watch?v=QWYXgBR-J1c
"My mother was my best friend and the anchor of our family, and I miss her dearly each and every day," Steinberg said. "Mother's Day is a difficult day for me and those who have lost a mother to PF, but also presents a great opportunity to continue to raise awareness of PF to the general public and the medical community through this important initiative."
"We are fortunate to have Lesley's leadership with this important effort. She understands firsthand the impact PF has on the lives of patients and their families," said Mishka Michon, Chief Executive Officer of the Coalition for Pulmonary Fibrosis. "She and this group of amazing women are creating a level of awareness that can move the disease research efforts forward."
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 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.
A photo accompanying this release is available at: http://www.globenewswire.com/newsroom/prs/?pkgid=25244
Teresa Barnes Coalition for Pulmonary Fibrosis 303-521-4080
