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Friday, April 23, 2010

Great Strides for Cystic Fibrosis -Oklahoma City, May 8th, 2010


The Great Strides for Cystic Fibrosis Walk is rapidly appoarching.  The walk will be held on May 8th in Oklahoma City at the Star's and Stripes Park. 

For those of you who might be stopping by for the very first time, I would like for you to take a moment to read through our blog and see why "Cystic Fibrosis" is important to our family and why it is even more important for us to help find a "CURE". 

Without the help from friends and family the foundation would not be able to do the work they do.  Through events like the Great Strides and the Breath of Life Gala, we help raise much needed funds that will be used to hopefully one day find a cure and give new life to those who live with Cystic Fibrosis.

Please help us make a difference by stopping by Raegan's Walkers and making a donation. 

A little about Raegan....

I have know Raegan for three years now and let me tell you, she has truly touched my life in ways that I can not describe.  However, she truly gives new meaning to the phrase "I THINK I CAN"! and keeps me going.  Nothing get's in her way and she never stops doing.....

Please help us make a difference in her life and give her the gift of life!

To make a donation please visit Raegan's Walkers CF secure webpage.  Your Donations go directly to the Cystic Fibrosis Foundation.


"where there is HOPE, there is LIFE"

Thursday, February 18, 2010

HAPPY BIRTHDAY RAEGAN

HAPPY BIRTHDAY RAEGAN

Sunday, February 7, 2010

Great Strides 2010 @ Stars and Stripes Park in Oklahoma City

Please take a moment to watch the video and learn a little more about Cystic Fibrosis. Our team is gearing up to start our 2010 Great Strides Fundraiser for the Sooner Chapter of the Cystic Fibrosis Foundation in Oklahoma City. The annual walk will be held on May 8th at the Stars and Strips Park at Hefner.





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If you would like to help by making a donation please visit us at Great Strides to make a donation or to join our fight.  If you would like more information please email us. 

"where there is HOPE, there is LIFE"

Saturday, January 30, 2010

SAVE THE DATE

Your all invited to join Raegan's Walkers for the Annual Great Strides Walk

Walk Site: 2010 Oklahoma City - Stars and Stripes Park at Lake Hefner

Date: May 8, 2010
Time: 08:30 AM
Chapter: Sooner Chapter -- Oklahoma City Office


Alright!  So we are in an economic crunch.  Everyone is feeling the tightning of their belt and having to make cut-backs.  However, CF don't adhear to the cut-backs, listen to the news, adhere to a budget or any of those daily evils we live by. 

Therefore, Raegan's Walkers is gearing up for 2010!  Our Great Strides Walk in Oklahoma City is 3 months away and we need your help to find a cure for CF.  So, lets band together to make a difference this year and help find a cure NOW!  Our loved one's need our help. Without it our wonderful team of doctors and specialist that spend countless hours trying to find a cure there would be no hope.  However, because of their dedication and your support, they have been able to extend the life of our loved ones to 36 years old.  Now, for most of you reading this your probably thinking how is that so great.  Well, before 2006, the life expectancy of a CF patient was barley 18. 

With the help of  family, friends and volunteers we have been able to put various treatments in the Drug Pipeline that could help extend the life of a patient or even CURE CF!  Without it, all of this stops.........  So please join Raegan's Walkers in 2010 and help us find a cure for CF.

"where there is HOPE, there is LIFE"
"making a difference one step at a time"

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

BREATH OF LIFE



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 oklahomacity@cff.org 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

LINKS FOR LIFE GOLF CLASSIC


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....