Thursday, September 20, 2012

TOBI podhaler approved in UK

TOBI Podhaler, the First Antibiotic Inhaler for the Suppression of Chronic Pseudomonas Aeruginosa in Cystic Fibrosis, Launches in the UK9/20/2011
  • A new dry powder form of the established antibiotic tobramycin is now available in a hand-held inhaler (Podhaler) for the suppression of chronic Pseudomonas aeruginosa (Pa) lung infection in adults, adolescents and children aged 6 years and older with cystic fibrosis.1
  • Data show that therapy with tobramycin inhalation powder significantly decreases treatment time; providing a 72% reduction in overall treatment time compared with nebulised TOBI (tobramycin nebuliser solution).2
  • Cystic fibrosis is a life-threatening genetic disease, which usually requires numerous and complex daily treatment regimens, creating a high treatment burden for people living with this condition.3

You can watch a youtube video of how quick and easy it is to use.

The US is waiting for the FDA approval.

The FDA panel voted 13-1 in favor of it, now it needs the FDA's approval.
Thursday, May 17, 2012

The Power of Two

Directed by Academy Award nominated producer Marc Smolowitz, The Power Of Two offers an intimate portrayal of the bond between half-Japanese twin sisters Anabel Stenzel and Isabel Stenzel Byrnes, their lifelong battle with the fatal genetic disease cystic fibrosis (CF), survival through miraculous double lung transplants, and improbable emergence as authors, athletes and advocates for organ donation and those suffering from CF in the U.S. and Japan.
The film world premiered in L.A. and New York last July at the International Documentary Association’s showcase DocuWeeks, had its international premiere at the Tokyo International Film Festival, and has garnered ten awards and screened at 30 film festivals and numerous community screenings in five countries on three continents.
Movie Tagline: Twin Sisters, Two Cultures, Two New Chances At Life…
Festivals & Awards: 30 Film Festival Selections & 10 Film Festival Awards!

Wednesday, May 9, 2012

Eat at CPK and give back to the LBF

Have dinner at the Del Monte Center, Monterey, CPK (California Pizza Kitchen) on Thursday May 10, 2012 and they will donate back to the Living Breath Foundation. Please use the following link to download the form to take to dinner.

Saturday, March 17, 2012

Exercise and CF

Great article about Emily Schaller and the importance of exercising with CF.
Saturday, February 11, 2012

CFTR Science

This is a great video from CFTR Science (by Vertex) about how the CFTR cell is effected by mutation class and type.

Monday, January 2, 2012

Potential CF Therapy Kalydeco (VX-770) Available to People with Critical Medical Need

An expanded access program for a potential new CF drug, Kalydeco™ (VX-770), is now available at participating clinical sites throughout the country for people with the G551D mutation who have highly limited lung function and may benefit from treatment.
Vertex Pharmaceuticals, Inc., the maker of Kalydeco (kuh-LYE-deh-koh), created this program for patients while awaiting review of the drug by the U.S. Food and Drug Administration (FDA).
The company is seeking FDA approval for Kalydeco in people ages 6 and older with at least one copy of the G551D mutation.
People with CF who may be eligible for this program and want more information should talk to their CF doctor or call the Vertex Expanded Access Call Center at 1-800-745-4484.
Kalydeco is an oral drug in development that targets the underlying cause of cystic fibrosis. Kalydeco was developed by Vertex with CF Foundation support and research input.