Sep. 30, 2013 — Cystic fibrosis is a lethal genetic disorder that in France affects one child per 4,500 births. An international team led by scientists at the Institut Fédératif de Recherche Necker-Enfants Malades (CNRS/Inserm/Université Paris Descartes), led by Aleksander Edelman, has recently discovered two new compounds that could be used to treat patients carrying the most common mutation. Continue reading New Compounds Display Strong Therapeutic Potential for Cystic Fibrosis
Co-produced by CysticLife, Cystic Fibrosis Lifestyle Foundation and
Essential Image Source Foundation, Living Xtreme: Beyond Cystic Fibrosis is a
27-minute documentary that highlights the stories of people with cystic fibrosis (CF) who Continue reading Watch Living Xtreme: Beyond Cystic Fibrosis
This is something that I think of every day. No matter what is going on, I am happy to be alive.
Today my husband and I took a drive up the Columbia River Gorge. It doesn’t make any difference to us what the season is, we always love that drive. Today was especially beautiful. Continue reading Life is good–Guest blog by Kathy Russell
Local researchers are working to advance stem cell research that will allow scientists to grow organs.
By Jenni Whalen
Researchers from the Center for Regenerative Medicine, which is a collaboration of Boston Medical Center and Boston University scientists, are working to advance stem cell research in a way that will allow them to grow organs, including lungs, in the not-too-distant future. Continue reading Growing Lungs May Soon Be A Reality
CFRI Retreat – 2013 Version
The 2013 version(Party of a Lifetime) of CFRI Retreat was another amazing success! With Jessica Martens and her committee leading the way, the retreat was full of fun, education, exercise, laughter, and tears. CF participants aged in range from 17-56, with two people in their 50s and several now in their 40s and late 30s. YES, we are getting older and wiser! Continue reading 2013 CFRI Retreat Review
We hope this note finds you in good health and thriving in all you do. We are pleased to announce that the Boomer Esiason Foundation (BEF) will be partnering with Novartis Pharmaceuticals Corporation to host our first ever live webcast, CFurther: Planning for College and Beyond, on Tuesday, July 30, at 2:00 PM ET/1:00 PM Continue reading CFurther: Planning for College and Beyond
As a 56 year-old CFer, I am glad I have saved my money as if I had no disease. That was not always the case. Continue reading CF and Finances
ADA, Oklahoma – Doctors said she would only live to be 10. She’s now 22. An Ada woman’s fight against cystic fibrosis is so inspiring, it’s now the focus of a documentary. http://www.newson6.com/story/22786634/movie-crew-documents-ada-womans-fight-to-live Continue reading Movie Crew Documents Ada Woman’s Fight To Live
In this episode, we talk with Katie O’Grady, a 17-year old senior at North Rockland High School in New York. Katie is an avid runner and is a member of the Red Raider varsity cross country and track teams. She talks about the role sports and exercise have played in managing her CF, but Continue reading CF Podcast #121: Katie O’Grady – Playing High School Sports with CF
Everyone in the cystic fibrosis community knows that it takes power to fight CF. Twin sisters with CF Ana Stenzel and Isa Stenzel Byrnes, and other members of the CF community, show what power can do in the documentary film “The Power Of Two.” Called “compelling” and “poetic” by Continue reading The Power Of Two” Is Coming To TV May 22!