How sweet it is!

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.

Ps this post marks # 300, crazy....

Voting Tiome!!

Voting just takes a second and if Emily wins $5,000 goes to the Cystic Fibrosis Foundation!

Click here to Vote for Emily Schaller to help win $5,000 for charity!

Take one look at this native Detroiter and it’s plain to see. Emily Schaller does not take guff. Equal parts spark and wit, Emily is claiming her victories against cystic fibrosis having launched Rock CF Foundation in summer of 2007. Today Emily’s battle against this deadly genetic disease is printed in magazines and posted on websites, her greatest victories being raising $150,000 for cystic fibrosis research and securing a sponsorship of $20,000 from New York-based Spin magazine for Rock CF Foundation’s annual benefit concert. She is a super teacher and a speaker. Emily teaches parents, patients and audiences in the CF world about the effects of cystic fibrosis and improvements being made to the treatments. She is a super athlete. Emily has ran over 300 miles and biked over 700 miles and ridden 282 miles from Detroit to Chicago to keep healthy and raise funds for Rock CF. She is a super musician. Schaller organizes and rocks out at her annual “Just Let Me Breathe” (JLMB) rock ‘n roll benefit concert. To date the JLMB concert series has raised over $60,000. It’s plain to see, Emily is positive in her crusade. “ I am inspired and motivated to keep plugging away because I know for a fact that the money we raise is indeed helping to improve the lives of cystic fibrosis patients.“

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 ”
-Emily Schaller

Supported charity: Cystic Fibrosis Foundation

Spooning for a cause

Making an impact NOW

Saving money is easier said than done… I have so many things on my list that I need to save up for. The majority of my list has to do with my health and let me tell you it adds up. Who would think that being able to breathe would be considered a luxury. I am in the market for a portable oxygen concentrator. I have done a ton of research and the one I am looking at is the Evergo by Respironics. It's FAA approved and most airlines allow it on their flights. It has 4 batteries and each battery has about 8hrs of life. It weighs less than 10 lbs and would make traveling stress free, not to mention I wouldn’t have to deal with O2 tanks for the times that I use portable O2. Basically all this translates to a luxury item that insurance won’t cover. GRRRRR

Well I was telling my sweet talented friend Lissa about the Evergo one day when she had an idea. See last year she gave me a special Love to Breathe Necklace that was just for her and I, the only 2 of its kind. Well let me tell you how many people lost sleep over not being able to ever own that amazing pendant. After numerous requests for the necklace she asked me what I thought about adding it to the collection, well I was hesitant cause I loved the idea that it was a one of a kind or two of a kind actually. So we were brainstorming back and forth and came up with the idea to only make 65 of them for $65. Sixty Five Roses is what some children call Cystic Fibrosis since it is so hard to pronounce. Then she got this great idea that what if we started getting more personal with our donations we could make a bigger impact now for patients. She is determined to help me get my Ever Go. Then we got to thinking how great it would be to help others with medical equipment etc that cost an arm and a leg. So many great ideas kept coming to mind. My cute friend Suzie will need to get her beautiful daughter a vest soon, well we all know those are expensive. I swear if you squint hard enough when you look at your vest you can almost see a car, or a down payment for a house. So how exciting will it be to help people now and get them the things they need to breathe a lil easier. We have more ideas to make Love To Breathe necklaces more personalized I'll post more on that later.

So with all this said I want to show you the First Limited Edition Love to Breathe necklace… They are numbered on the back and when Emily Schaller went to visit Ellen Degeneres well she took her number 5/65.

Click here to go to Lissa's Etsy site

simple and smart ways

to avoid getting sick this cold and flu season.

My Dad sent me this e mail I thought it was interesting and had some good points...

1. Frequent hand-washing (well highlighted in all official communications).

2. "Hands-off-the-face" approach. Resist all temptations to touch any part of face

3. Gargle twice a day with warm salt water (use Listerine if you don't trust salt).
H1N1 takes 2-3 days after initial infection in the throat/nasal cavity to proliferate And show characteristic symptoms. Simple gargling prevents proliferation. In a way, gargling with salt water has the same effect on a healthy individual that Tamiflu has on an infected one. Don't underestimate this simple, inexpensive and Powerful preventative method.

4. Similar to 3 above, clean your nostrils at least once every day with warm salt Water. Not everybody may be good at Jala Neti or Sutra Neti (very good Yoga Asanas to clean nasal cavities), but blowing the nose hard once a day and Swabbing both nostrils with cotton buds dipped in warm salt water is very effective In bringing down viral population.

5. Boost your natural immunity with foods that are rich in Vitamin C. If you have
To supplement with Vitamin C tablets, make sure that it also has Zinc to boost Absorption.

6. Drink as much of warm liquids as you can. Drinking warm liquids has the same Effect as gargling, but in the reverse direction. They wash off proliferating viruses From the throat into the stomach where they cannot survive, proliferate or do any Harm.

"Best day of my Life"

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!

Em I am So proud of you and your incredible journey keep Rockin CF!

Ps Ellen is now the proud owner of a special edition Love to Breathe necklace.... More on that to come in a later post.. Thanks Em for taking that to her :)

Emily to Ellen SLC style

I had a great time with Em while she was in SLC!!! It was SO great to finally meet her and her Dad. It was freezing yesterday and still pretty chilly today so we didn't get much riding time. She had an awesome interview on one of the radio channels yesterday and she did GREAT! The sun was shining today so we busted out the vespas and did a lil ridin. My moms BF John brought his truck over so we could get some pics with that. We went over to my dads so she could get some pics with his animals, I'll save those for another post. She is on her way to Delta for the night then into Vegas for a couple of days. Then off to Ellen! Go Em Rock CF!!

Our CF gang sign

Posing with Blitz

The Tire shot

I'm not to sure why are helmets are still on I guess in case we fell off ;)

Me rockin my Live, Love, Breathe helmet

She's off to Delta!