And so it starts...

...the planning for the next Great Strides Walk in Clarksville, TN.

 

The mission of the Cystic Fibrosis Foundation is to assure the development of the means to cure and control Cystic Fibrosis and to improve the quality of life for those with the disease. Clarksville continues to get behind that mission and support not only our Clarksville CF families, but all who live with Cystic Fibrosis. As we draw closer and closer to a cure, for the first time in my life, I find myself thinking...what if the cure is found before walk day?

 

What if???

 

What if...there was no longer a need to eat more pills than food?

 

What if...there was no longer a necessity for 4 - 6 hours of breathing treatments a day?

 

What if...you could play with your children any time and way you wish?

 

And know you will be here when they get married and have kids of their own?

 

What if...you could spend more time at home than in the hospital?

 

What if...you could breathe?

 

In the past seven years, the CFF has brought 7 drugs to market. YOUR support has made this happen. Please help further the momentum of the CFF as we get closer and closer to the cure.

 

Money buys science and science saves lives. -- The Cystic Fibrosis Foundation

 

http://www.cff.org/GiftReg/TeamClarksvilleDebbieMcconnell

 

 

 

 

2013 Turkey Trot 5K

 

TriStar Ashland City Medical Center Ashland City and the APSU Lambda Nu proudly present the 2013 Turkey Trot 5K on Saturday, November 9th. The Run will take place at Riverbluff Park in Ashland City with all proceeds to benefit the Cystic Fibrosis Foundation. PreRegister through August 31st for just $20.

 

The CFF is The Leader in the search for a cure for Cystic Fibrosis. Your support allows the CFF to provide the much needed support, counseling, education, resources, and referrals to children with Cystic Fibrosis and their families.

Kalydeco

There is a light at the end of the tunnel...

Julie: The Courage To Breathe

Julie: The Courage to Breathe

 

 

 

100% of the royalties are donated to the Cystic Fibrosis Foundation. A story of courage, hope, and true love. Read this book and join in the fight against Cystic Fibrosis. Ask me how.              

We are in the home stretch...

The light at the end of the tunnel is no longer a train. Watch what CF Researchers are most excited about and view the Cystic Fibrosis Foundation Timeline below. The CFF is dedicated to the search for the cure and committed to CF families - the fight will not end until CF stands for Cure Found. If you have 30 minutes, 30 hours, or 30 days - we need you! Your time and energy can help fuel the pipeline that is finding the cure for CF. Ask me how.

1938	Dorothy Andersen, M.D., writes the first comprehensive medical report on cystic fibrosis (CF).
1953	During a heat wave in New York City, Paul di Sant’Agnese, M.D., and others connect the extra loss of salt by people with CF to the disease's underlying cellular 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, and Andersen and Harry Shwachman, M.D.
1961	The Cystic Fibrosis Foundation-accredited care center network begins by establishing two centers devoted to treating CF.
1962	The CF predicted median survival age is 10 years.
1962	A total of 30 Foundation-accredited care centers are now in operation.
1964	To investigate CF at the cellular level and find answers about this complex disease, the Foundation establishes the first basic science committee.
1966	The Cystic Fibrosis Foundation launches a patient data registry that collects health information of patients seen at Foundation-accredited care centers.
1978	The number of Foundation-accredited care centers totals more than 100.
1982	The Foundation creates the Research Development Program, a network of research centers at leading universities and medical schools nationwide.
1988	The Foundation launches the Cystic Fibrosis Services Pharmacy.
1989	A team of Foundation-supported scientists discovers the defective CF gene and its protein product (CFTR), 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.
1993	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 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 Foundation’s Therapeutics Development Network.
2000	Cystic Fibrosis Foundation Therapeutics (CFFT), a nonprofit research affiliate of the Foundation, is established to govern drug discovery and development efforts.
2000	Foundation-supported scientists 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 to turn off the bad ones.
2002	A CFFT-supported study shows azithromycin improves CF lung health.
2003	CFFT-supported scientists at Structural GenomiX, Inc., determine the three-dimensional structure of a portion of the CFTR protein, opening the door to more drug discovery opportunities.
2004	CFFT-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	VX-770, an oral drug in development by Vertex Pharmaceuticals, Inc., with support from the 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 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.
2008	The Foundation and Vertex 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.
2010	The FDA approves a new inhaled antibiotic called Cayston® (aztreonam for inhalation solution) for the treatment of CF. Developed by Gilead Sciences, Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent lung infections and develop resistance to existing antibiotics.
2011	The Foundation announces that Phase 3 clinical trials of VX-770 showed profound results. Those receiving the drug demonstrated the highest increase on a lung function test seen in any clinical trial of a CF drug. Vertex submits a New Drug Application to the FDA for VX-770 under the trade name Kalydeco™.
2011	Results from the first part of an ongoing Phase 2 trial testing Kalydeco in combination with VX-809 show promising results in people with the most common CF mutation, Delta F508.
2012	The FDA approves Kalydeco™ for people with the G551D mutation of CF ages 6 and older. The drug is the first to address the underlying cause of CF and opens exciting new doors to research and development that may lead to a cure for all people living with the disease.
2012	Results from a Phase 2 trial of Kalydeco in combination with VX-809 show a significant improvement in lung function in people with two copies of the most common CF mutation, Delta F508.
2012	The Foundation maintains a robust pipeline of potential therapies that target the disease from every angle. The more drugs in the pipeline, the greater the odds of producing successful therapies and a cure for CF.

 

 

Revolutionizing Cystic Fibrosis Treatment

Revoluntionizing Cystic Fibrosis Treatment

 

                       It's called Ki-Breath, and it promises to revolutionize the treatment of

                       Cystic Fibrosis in children. It's a video game that's not only fun to play,

                       but can increase the lifespan of people with this terrible illness. The makers

                       of Ki-Breath are currently working with physiotherapists to validate the   

                       game. Once complete, Ki-Breath will most likely be available in France

                       first, due to the difference in the certification process in other countries.

 

Ki-Breath Trailer

Ruby Tuesday Give Back Day

 

Ruby Tuesday is proud to be a part of your hometown and believes in giving back. Join us for the July Ruby Tuesday Give Back Day - take this flyer to the Madison Street location and 20% will be donated to the Cystic Fibrosis Foundation. The last Tuesday of every month is Give Back Day. Sign up to receive flyers by emailing clarksvillecff-1@yahoo.com - subject line "Ruby Tuesday Flyers".