Saturday, October 31, 2009
Thursday, October 29, 2009
"Sometimes we're so busy worrying about what will kill us, that we forget how to truly live"
Tuesday, October 27, 2009
Monday, October 26, 2009
Below is an article that will only mean good news for the CF community if it gets passed on Dec 10th, everyone keep your fingers and toes crossed that day! I have been on Aztreonam now since about June of 08 and I ABSOLUTELY love it! It's nebulized 3x a day with the E flow and takes about 3 min. You do it on your off months from TOBI. I really feel like it's made a difference in my life and I can't wait for it to help the rest of you!
A Gilead Sciences Inc. investigational antibiotic for cystic fibrosis patients with deadly infections will be reviewed by an FDA panel Dec. 10.
The Foster City-based drug developer (NASDAQ: GILD) said that inhalable aztreonam lysine would be reviewed by the Food and Drug Administration’s Anti-Infective Drugs Advisory Committee. The drug is an antibiotic against the bacteria Pseudomonas aeruginosa, the single greatest cause of death for cystic fibrosis patients.
FDA reviewers in September 2008 recommended that the agency not approve the drug, saying that Gilead needed to do more clinical testing. Gilead last week said that a head-to-head study of the drug versus Novartis AG’s tobramycin inhalation solution, or TOBI, will be fully enrolled by the end of this year and data from the study will be available in mid-2010.
Inhalable aztreonam lysine has won conditional approval in Canada and, in September, Europe under the trade name Cayston. The product will be available in Germany and the United Kingdom in early 2010, Gilead has said.
Gilead also is seeking approval from drug regulators in Australia, Switzerland and Turkey.
The drug has "orphan" status in the United States and Europe, granted to products that treat disorders that affect less than 200,000 people. The designation gives the product seven years of market exclusivity and possible tax breaks while under development.
Friday, October 23, 2009
Emily's journey with CF started with her diagnosis at age 18 months when doctors told her parents their daughter may not live long enough to graduate from high school. Cystic fibrosis is a life-threatening disease that causes thick mucus to build up inside the body and block vital organs like the lungs and pancreas from functioning properly. Thanks to her lifetime of treatments Emily is now a healthy and happy 27-year-old. “The Cystic Fibrosis Foundation is the reason I am alive today. Their constant research efforts enable me to do the things I love to do.” Nationally recognized as an advocate, Emily and Rock CF supporters and volunteers across the globe share in her passions of public speaking, performing, the arts, running and biking to fulfill her mission to “ROCK CF.”
In January of 2007 Gennentech Heroes of Hope Program named Emily a Hero Of Hope and Novartis’ patient and family outreach website, CFVoice.com spotlights video clips and a featured video about Emily and how she is thriving with cystic fibrosis. These and many other Rock CF press clips are updated at HYPERLINK "http://www.rockcf.org" www.rockcf.org.
For Emily, exercising and a positive outlook along with following her extensive daily medical routine of breathing treatments, chest physical therapy and a laundry list of medications are the keys to controlling CF. Making the journey on her terms and not the disease’s is her way of staying in ahead of the game to keep strong, healthy and in charge.
As an athlete, maintaining physical status every pedal and step increases pulmonary function and she has proved this to be true. In June of 2008 Emily completed her first half marathon running 13.1 miles. With the help of her friend/former gym teacher, she finished in two hours and four minutes! Her goal for 2009 is to break two hours. She will also run her first full marathon in ‘09.
Emily's truest reward comes from speaking to groups of all ages and sizes all over the country about CF. “We need to tell more people about CF and its’ effects because it still is the #1 genetic killer of children and young adults. Also I love to share my story to others with CF and their families to maybe give them a little hope and inspiration.” Elementary through college students, medical students, corporations with five people up to a crowd of 4,000 medical professionals, Emily has spoken to just about every demographic there is.
Twice yearly Emily is admitted to the hospital for what she calls her “tune up.” During these hospitalizations IV antibiotics are given to treat lung infections and the bugs that may be active and awaiting an attack. As with most CF patients this is old hat and Emily represents her fight working, training and counseling while on IV’s. Clearly, there is little that can slow this hero behind Rock CF Foundation down and as long as Schaller can talk we will continue to hear Emily's roar of hope and awareness about cystic fibrosis.
Let’s ROCK CYSTIC FIBROSIS so hard that one day CF will stand for Cure Found ”
Thursday, October 22, 2009
Wednesday, October 21, 2009
Sunday, October 11, 2009
Thursday, October 8, 2009
When I heard those words from Em last night I had goose bumps!! I was so excited and nervous for her all day. She was at the Ellen taping yesterday, so make sure to watch Ellen today! Pay close attention when they dance their hearts out in the beginning. Read Ems own words here as she blogs about her best day EVER!