Thursday, October 1, 2009

Research Milestones

1938 Dorothy Andersen, M.D. writes the first comprehensive medical report on cystic fibrosis (CF).

1953 During a heat wave in New York City, Dr. Paul di Sant’Agnese and others connect the extra loss of salt by people with CF to the disease's underlying problem.

1955 The Cystic Fibrosis Foundation becomes incorporated as the National CF Research Foundation and awards the first research grants to Drs. di Sant’Agnese, Andersen and Shwachman.

1961 The Cystic Fibrosis Foundation-accredited care center program begins with two centers being established.

1962 The CF predicted median survival age is 10 years.

1962 A total of 30 Cystic Fibrosis Foundation-accredited care centers are now in operation.

1964 To investigate CF at the cellular level and find answers about this complex disease, the Cystic Fibrosis Foundation establishes the first basic science committee.

1966 The Cystic Fibrosis Foundation launches a patient data registry that includes the history of patients seen at CF Foundation-accredited care centers.

1978 The number of Cystic Fibrosis Foundation-accredited care centers totals more than 100.

1980 The Cystic Fibrosis Foundation creates the Research Development Program, a network of research centers at leading universities and medical schools nationwide.

1988 The Cystic Fibrosis Foundation launches the Cystic Fibrosis Services Pharmacy.

1989 A team of Cystic Fibrosis Foundation-supportes scientists discovers the defective CF gene and its protein product (CFTR) thus opening the door to understanding the disease at its most basic level.

1990 CF researchers achieve “proof of concept” that gene therapy (in the lab dish) is possible.

1993 Landmark gene therapy trial begins in people with CF.

1994 The Food and Drug Administration (FDA) approves Pulmozyme, which is proven to thin the tenacious, sticky mucus in the lungs - and is the first drug developed specifically for CF. The time taken to develop Pulmozyme is less than half of the industry average.

1997 The Cystic Fibrosis Foundation establishes the Therapeutics Development Program.

1997 The FDA approves TOBI, the first aerosolized antibiotic designed for CF, which is proven to reduce hospital stays and improve lung function.

1998 Specialized clinical research centers are designated as the Cystic Fibrosis Foundation’s Therapeutics Development Network.

2000 Cystic Fibrosis Foundation Therapeutics, nonprofit research affiliate of the CF Foundation was established to govern drug discovery and development efforts.

2000 Scientists supported by the Cystic Fibrosis Foundation map the entire genetic structure of the most common cause of CF lung infections-the Pseudomonas aeruginosa bacterium. Researchers can identify the function of specific genes and find ways (drugs) to turn off the bad ones.

2002 A Cystic Fibrosis Foundation Therapeutics-supported study shows azithromycin improves CF lung health.

2003 Cystic Fibrosis Foundation Therapeutics-supported scientists at Structural GenomiX, Inc. determine the 3-dimensional structure of a portion of the CFTR protein, opening the door to more drug discovery opportunities.

2004 Cystic Fibrosis Foundation Therapeutics-supported studies in Australia and at the University of North Carolina show that hypertonic saline helps clear CF mucus. It is proven to improve lung function and reduce hospital stays, and becomes a therapeutic option.

2006 The predicted median age of survival for those with CF increases to 37 years.

2006 VX-770, a drug in development by Vertex Pharmaceuticals with support from the Cystic Fibrosis Foundation, enters clinical trials. VX-770 is one of the first compounds to attack the root cause of CF, and works at the cellular level to open chloride channels that do not function correctly in people with the disease.

2007 Vertex Pharmaceuticals selects a second potential drug known as VX-809 for development. Like VX-770, VX-809 addresses the root cause of CF, but it works by helping the defective CF protein move to its proper place in the cell.

2007 Gilead Sciences, Inc. applies for FDA approval for its inhaled antibiotic therapy, aztreonam lysine, which has been shown to improve respiratory symptoms in CF patients.

2008 The Foundation and Vertex Pharmaceuticals achieve a “proof of concept,” showing that it is possible to treat the root cause of CF. During Phase 2 studies of VX-770, trial participants, all of whom carry the G551D mutation of CF, show unprecedented improvements in key signs of the disease.

2008 More than 30 potential therapies are in the Foundation’s drug discovery and development pipeline. The more drugs in the pipeline, the greater the odds of producing successful therapies and a cure for CF.

Monday, September 14, 2009


November 13, 2009
6:00 pm - ?
Cowboy and Western Heritage Museum
1700 NE 63rd St.,
Oklahoma City, OK 73111

The Breath of Life Gala brings together OKC’s community leaders, friends and family to support the CF Foundation. Guests will enjoy one-of-a-kind entertainment and will have a chance to bid on live and silent auction items from area retailers, artisans and designers.One of the highlights of this event is the Bid for a Cure speech followed by a chance to give a pledge to help find a cure for CF. Please make your plans now to attend this outstanding event.

To ask a question or to find out more information, please call (405) 787-0056 or email for information.

If you would like to make a donation on behalf of the Raegan's Walker's Team in honor of someone you know who has CF, please email us at Raegan's Walkers

Saturday, August 29, 2009


Hey everyone, there is a Golf Tournament in October that is going to benefit Cystic Fibrosis and would love for everyone to stop out and support us. Every dollar raised is another dollar that will help fund research so we can be one step closer to a CURE! So come by and support our cause....

Wednesday, August 5, 2009

Mayflowers Mojitos and Me: Giveaway

Hey Everyone, Now that I dont have a ton of homework to do each night, I can actually start blogging again and stay up late. Tonight while blogging and just kicking back, I happened to run across some really fun blogs. I found this one:

MOONFLOWERS MOJITOS and ME: through MY CF Journey with GOD blog. Anyway, over at Moonflowers Mojitos and ME, she is having a fun little give away and the picture to the left is some really cute cocktail napkins that she is giving away along with several other goodies. So stop by and say hi, and please let her know that Wolfhuntress2002 (Robin Inge) sent you please. HURRY!!!!! DEADLINE IS AUGUST 7

Thursday, July 16, 2009


Good Morning,

I am so excited to share this news. Congress has passes Legislation that will require the state of Texas to start screening all newborns for CF. For those of you reading that dont know what CF stand's for.... ( aka Cystic Fibrosis). That is a huge accomplishment. Now all 50 states will require the screening. While this is a big step for CF, we still need more. Due to the economy this past year, our goal for the Great Strides Walk was short of our expected goal. So money is still needed to help get those treatments and cures found to increase the hopes for a better life for our CF children. Please stop by and make a donation no matter how small it is. Even a dollar can make a difference if everyone donated a $1.00

Just think each day we spend $4.00 on a cup of coffee at starbucks, or $9.00 for lunch out, $50.00 on a carton on cigarets. If we would stop and take the time to remember that this small sacrifice could help find a cure and give these children the hope for life wouldn't it be worth it.


Friday, June 12, 2009

Help me Find a Cure

Have you ever been had a week where nothing goes right and nothing seems to fix it? Ever had a day where all you do is complain? Well, I have and today I was brought to my knees and reality struck me right between the eyes. I had emailed my cousin who lives in Pilot Point and when she wrote back she told me that one of her students who had Cystic Fibrosis had lost her fight in May of this year. I think what got me the most was when she said that her friends had went to Houston to visit her in the hospital and they took her Prom Night to her in her hospital room. This was her SENIOR YEAR!!!!

Wow! Why? At 17, she had her whole life ahead of her! Society spends most of their time wrapped up in things that dont matter and we can not take the time to listen when we need to. It breaks my heart to think this family will not be able to see their little girl grow up when maybe we could have tried a little harder, pushed a little more, begged a little deeper!

Well, no more...................... I'm begging that each person who stops here and see's this post realize that our children who have Cystic Fibrosis need's our help and without it can not find a cure for Cystic Fibrosis. Guys, this is real!

I have the pleasure of knowing a very awesome little girl name Raegan. She lights up the world and then some and everyone she comes in contact with loves her dearly. I want more for Raegan and I want her family to be able to watch her grow into a beautiful young woman so that she may accomplish her dreams and goals of being a Veternarian one day. Please take the time to visit Raegan's Walkers donation site and make a donation. The money you donate helps find a cure and hopefully soon.

Raegan's Walkers

"where there is HOPE, there is LIFE"

Wednesday, June 3, 2009

Texas Rose Round-Up Summer Concert


The Inaugural

Texas Rose Round-Up

Summer Concert
At RR Mingus Lake Ranch
Mingus, Texas
Benefiting the Cystic Fibrosis Foundation
Saturday, June 20, 2009 3:00 - ?
Allan Meyer – Chair
John Giordano, Eric Walsh, Rick Wegman, Jon Bonnell
The Randy Rogers Band

Charlie Robison & Wade Bowen
1- Guest Pass Transportation to and from the Event on a Coach America Luxury Bus Seating Within the Ropes - BYOLCOB - Bring Your Own Lawn Chair or Blanket Food and Beverage 1 Texas Rose Round-Up T-Shirts 1 Texas Rose Round-Up Koozies Recognition in All Printed Event Materials General Admission w/Transportation $150 ($119 tax deductible) Transportation to and from the event Lawn Seating - BYOLCOB - Bring Your Own Lawn Chair or Blanket Feel Free to Bring in Your Coolers Loaded with Food and Beverage of Your Choice or You May Purchase Food and Non-Alcoholic Beverages During the Event. General Admission w/o Transportation $100 ($69 tax deductible) Lawn Seating - BYOLCOB - Bring Your Own Lawn Chair or Blanket Feel Free to Bring in Your Coolers Loaded with Food and Beverage of Your Choice or You May Purchase Food and Non-Alcoholic Beverages During the Event General Admission w/o Transportation $100 ($69 tax deductible)Lawn Seating - BYOLCOB - Bring Your Own Lawn Chair or BlanketFeel Free to Bring in Your Coolers Loaded with Food and Beverage of Your Choice or You May Purchase Food and Non-Alcoholic Beverages During the EventFood and Beverage provided by Jon Bonnell

Thursday, April 16, 2009

Great Strides for Cystic Fibrosis

May 10, 2009
I would love if each and every person that stop's by would take the time to visit the Cystic Fibrosis so that they may learn a little more about what Raegan lives with each day. Our hope is that we can raise enough money and make CF stand for "CURE FOUND".
Our family has put together "RAEGAN'S WALKERS" to help support the Cystic Fibrosis Foundation and their battle to find a cure for Raegan and all the other CF patients. Without us, there would be no treatments and the life expectancy would not be what it is today.
We hope you will visit our DONATION page and help us fight this fight!
To donate click here
"where there is HOPE, there is LIFE"

Monday, March 16, 2009


Good Morning Everyone,

Hope everyone is having a wonderful SPRING BREAK vacation. This past weekend we picked up Raegan, Nonie and Madi came down and so did Aunt Lilly and her granddaughters. Saturday we spent the day taking everyone on a wagon ride and playing outside and then Sunday we cooked out, played with the animals and then took the kids and let loose on the 30 acres. They divided into teams and played hide-&-go-seek. Everyone had a blast. When we got home everyone had dinner and the girls got in the hot tube and wouldn't let the boys play. HA HA! Anyway, will post some pictures later. Have a great SPRING BREAK

Thursday, March 12, 2009

Cystic Fibrosis

"where there is HOPE, there is LIFE"

Tuesday, March 10, 2009


Hi Everyone, Just wanted to let you know that the 1st Annual Crop out CF Event has been postponned. Everyone will be going on Spring Break in the next few weeks and then there are some classes going on the weekend before. So we are going to reschedule the event at a later time. Please stay tuned for more information. However, if you'd like to donate to the Cystic Fibrosis Foundation, please visit the Raegan's Walkers Donation Page.

I know that everyone is going though some rough times right now. However, please remember that we are trying to save a life by raising money to help the Foundation get much needed therapies approved by the FDA and hopefully one day a CURE!

'"where there is HOPE, there is LIFE"

Saturday, February 28, 2009

Spring is Coming....

Ok, SPRING is usually a time for new life.... trees blooming, baby calves or colts being born. Something new and fun. I love spring! Everthing starts coming alive again. So I'm asking that each and everyone of you that stop by and visit to please stop by RAEGANS WALKERS GREAT STRIDES HOME PAGE and make a $1.00 donation. If each of you do this, then we can make SPRING something wonderful. Help us give LIFE to those with CF and hopefully we can help find a cure.

Saturday, February 14, 2009

valentine\'s day

Well hope everyone is having a Happy Valentines today. For those of you who would like to send Raegan a Valentine.... post here or go to Raegan's Walker Page and donate a dollar to help support Cystic Fibrosis Foundation and leave a message there Help Raegans Walkers reach our Goal of $3000 this year to help find a CURE!

Monday, February 9, 2009

Cystic Fibrosis~Great Strides Website

Hey Everyone,

Just wanted everyone to know they are doing maintance and upgrades on the Great Strides and Cystic Fibrosis Web Page. So if you go to donate and it shows an error, please email me and let me know. They should have everything fixed within a day or two.

Thursday, February 5, 2009

Raegan's Hope For Life


I know that in our during our busy day we dont make much time for anything other than work and whatever we need to get done before bed...

However, I want you to take the time and stop to watch this video so you can meet Raegan and know a little about her and Cystic Fibrosis and why we fight this fight. Currently there is no cure for Cystic Fibrosis and without your help there will not be one. We dont have the funds from the large companies like, Cancer and MS. So, the CF Foundation relies on the families and friends of the loved ones who life with this diesease to help raise money. Once you view this video you will quickly see why we love Raegan so very much and why this is important to our family.

You might thing that you dont have anything but a dollar to give. THAT IS OK! If you send this link to 10 people and they send to ten people and so on..... IT WILL MAKE A DIFFERENCE! So visit our RAEGANS WALKERS Great Strides Home page and make a Donation to help save a life.


Raegan's Walkers

Wednesday, February 4, 2009


Wenona and I will be hostessing the First Annual Crop Out Cystic Fibrosis Crop in Wichita Falls. Scrapbook 'N Such will be sponsoring the event. 100% of the proceeds from this event will be donated on behalf of Raegan's Walkers to the Cystic Fibrosis Foundation for the Great Strides Annual Fundraising Event that the CF foundation host every year in May just before Mother's Day.

For tickets or more information, please contact Scrapbook~n~ Such at 940-923-5361 or email Robin. If you would like to participate or donated to the fund please see RAEGAN'S WALKERS team page located on the CYSTIC FIBROSIS -Great Strides web page.

1st Annual Crop OUT Cystic Fibrosis Crop

4020 Rhea Road, STE 38

Wichita Falls, TX 76308


Time: 10:00 am till 8:00 pm

Cost: $40.00 Donation

Donation includes: t-shirt, (1) make-n-take, food, door prizes and lots and lots of fun.