The Amazing Will Harbison

Today has been a rough day this afternoon I learned about Lauren getting her wings yesterday, then tonight T called to tell me my super hero Will got his wings this evening.

My heart is heavy with sadness, Will endured more than anyone could ever imagine but he fought a good fight and never complained. So I titled this post the same as this post here. Harbison family you have my thoughts and prayers. I know Will is breathing Easy and looking down at us with 20/20 vision and a pepsi in hand! I love you Super Hero thanks for teaching us SO much, your courage was amazing!

You can read more on Will and follow his blog here. He had such a passion for so many things but I think his true passion was being an amazing Uncle to Kayli she has such a very special angel watching out for her now! He loved her so much and he lit up when he talked about her.

BREATHE EASY MY FRIEND!

I AM SO BLESSED TO HAVE KNOWN YOU! Xo

Breathe Easy Lauren!

Breathe Easy Lauren! I am so blessed to have known you! You were an inspiration and a true Hero to the CF community! My prayers are with Brad and both your families~! Xo

God saw that she was getting tired And a cure was not to be. So he put his arms around her And whispered, “Come with me”. With tear filled eyes we watched her suffer And fade away Although we loved her deeply We could not, make her stay. A golden heart stopped beating, Hard working hands put to rest. God broke our hearts to prove to us He only, takes the best.

Anonymous

Swine Line Round 2

Well round 2 went much better thanks to my Dad! My Dad got in line for me at 7:30 am I got there at 9:30 with Starbucks in hand for us both, it was 34 degrees and lil snow flurries... BURRR

They started giving the shot out at 10 and I FINALLY got mine at Noon. They line was over a mile long and so ridiculous!! This clinic however were only giving it out to high risk so that was good! Some people were wheeling and dealing let me tell ya. Ps people allergies does not make you high risk, get the flu mist!

Me In the swine line!

When we were getting close!

Happy Halloween to everyone! I am headed to the U game tonight. Go UTES!! Ill be sportin a mask there too! I still have to be careful for 14 days for the shot to be in full effect! But have some sense of relief.

Taste of Salt Lake is one week away... so crazy! I can't wait!

Eye Opener

"Sometimes we're so busy worrying about what will kill us, that we forget how to truly live"

I saw this on Face Book and had to re post it on my status and here. I needed to see this!! I have been a hermit lately due to the whole swine thing. No thanks to the media and the fact that it's everywhere! So I cut myself off from all forms of media. I still have not been able to get the vaccine. I am hoping that tomorrow I will be able to get it. Fingers crossed! So only positive healthy thoughts, washing my poor 90 year old hands, purelling like crazy, sporting masks in overly crowded areas and gargling with salt water, sinus rinses and lots of hot drinks and with all those precautions the swine can kiss my A** ;)

I have a lil sinus thing going on and am not liking it one bit how does a hermit get sinus troubles?? I started TOBi on Mon so maybe that brought it out who knows. I can guarantee you tho I am fighting it with full force it doesn't stand a chance! By the way I love gargling with hot apple cider vinegar. I swear it helps break stuff up in the sinuses maybe TMI but I got a couple petrified plugs out when I did this the other day :) Gotta love getting rid of plugs!

I have been painting a ton!! I have been branching out and experimenting a lil having a ton of fun with it. I'll post some of them on here. Today I'll leave you with...

JUST LET ME BREATHE

Seriously? Not quite ready

Today I woke up to a white blanket covering the ground... Ugh I am not ready for snow yet.

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