Happy Holidays!!!

 

 

It's amazing how much you can accomplish when it doesn't matter who gets the credit. -- Unknown.

 

Join A Team For A Cure Today - Add more Tomorrows.

Join A Team For A Cure

Happy Thanksgiving

 

Happy Halloween from Team Clarksville!!

Julie: The Courage to Breathe

Please watch this story about Julie Ice and her amazing courage. Then read Julie: The Courage to Breathe - written by Julie's husband Roy. 100% of the royalties go to find the cure. On behalf of the 30,000 people with Cystic Fibrosis, and the 10 million unknowing CF carriers, I thank you.

Julie Ice - a CF Survivor

Run 4 Your Lives Zombie Fun Run

 

October 5, 2013 will be the inaugural Run 4 Your Lives Zombie Fun Run at Rotary Park.

 

Registration begins at 9am with the Fun Run beginning at 10am.

 

This event is about awareness, support, and an all-around fun morning.

 

Come learn about Cystic Fibrosis and its impact in Clarksville, TN.

 

As we "Run 4 Our Lives", we are also running for the lives of those affected by CF.

 

The funds we raise today will support CF research, care and treatment.

 

 Locally raised funds stay in our area.

 

The money we raise today will fuel the research we have tomorrow.

 

A heartfelt thank you from me, the Cystic Fibrosis Foundation,
and all of our Clarksville CF families.

 

CF will stand for Cure Found and YOU will have been a part of making that happen.

Debbie McConnell, debbiemcconnell@bellsouth.net, 931-980-8837

 

 

 

 

Fabulous Fundraisers = Finding The Cure

 

 

 

Think you don't have time to volunteer?

IF YOU HAVE ONE HOUR A WEEK, you could: Make phone calls. Recruiting volunteers for events, thanking donors, or setting up meetings with potential future sponsors – can be done from your own home!

OR: Serve on a committee for an upcoming event, Set Up or Take Down an event, or lead an event of your choosing!

IF YOU HAVE ONE HOUR A MONTH, you could: Auction item procurement: visit local businesses to gather auction items for upcoming events.

IF YOU HAVE ONE HOUR A YEAR, you could:
Start a letter writing campaign for Great Strides. Send it to all of your friends, family, and co-workers.

You don't have to be a scientist to cure CF. Events are continually added to our calendar.

Join us today! Ask me how.

 

 

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".

65 Roses

The rose and the thorn, and sorrow and gladness are linked together. -- Saadi

"65 Roses" is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.

The Weiss brothers, Richard, 5; Arthur, 7 and Anthony, 16 months.

After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.
He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."
Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.
65 Roses^® is a registered trademark of the Cystic Fibrosis Foundation.

Please join us!!

 

The Car Wash is a 100% charity event to benefit

the Cystic Fibrosis Foundation.

 

           Funds raised from this event will provide the support,      

  counseling, education, resources, and referrals to

  children with Cystic Fibrosis and their families.

 

To Volunteer:

Contact Debbie: 931-980-8837

clarksvillecff-1@yahoo.com

 

 

 

Advice from a CF Adult

"I've had a significant osteo issue for a while. I dropped to as low as -3.7 in L1-L4 (Lumbar). I cannot take Fosamax or any other bisphosphonate and I've tried Citrical and just about everything else. It got so bad..., the endocrinologist, Dr. Tangpricha was about to give me Forteo. It's good for two years and after that, like other bisphosphonate, once you take them for 2-4 years, you cannot take them for life. Not a good choice.

So I want to share this with you. As a last hope, I gave this supplement as shot. A vitamin shop owner swore that all the old people he knew were getting great DEXA scans. Desperate, I tried it, waited and hoped.

Since starting on this product back in 2010, I've turned it around. I had my annual DEXA yesterday revealed a 4.3% increase since last year and 13% since 2006. That's very good. Keep in mind that 1% growth is considered very good. Now, I'm completely out of the osteoporosis range of -2.5 on everything but L-4. It's now 2.9. Dr. Tangpricha is very encouraged by it.

The product is called "Grow Bone" by Vitamin Code. It is a raw, organic calcium proprietary blend NOT a drug. I swear by it. http://www.growbone.com/

I think any CF patient with osteo issues should take it, whether CFF endorses it or not. And...if you have lady friends who have osteo issues, I highly recommend it. I'm a living testament to it."

The Aptalis CF Cycle for Life

 

 

Calling all cyclists from beginner to advanced to ride in the 4th Annual Aptalis CF Cycle For Life^® event! No matter your cycling ability, we have a route for you through the scenic terrains of the Middle Tennessee. Enjoy the beautiful rolling hills and countryside with your friends, family and colleagues.

This premier cycling event is a fully supported ride with three routes options, stocked rest stops every 10-15 miles, support and gear (SAG) vehicles, on-site medical services, plenty of tasty food, refreshing beverages and much more. This unique event empowers participants to take action and demonstrate their fight in finding a cure for cystic fibrosis in a tangible, emotional and powerful way.

Sponsors, committee members, volunteers and, of course, riders are currently needed.

For information contact Tiffany Kerns at (615) 255-1167 or email tkerns@cff.org
Participants under the age of 18 are not permitted to participate in the Aptalis CF Cycle For Life^®. Bike helmets are required to ride.

To learn more about other Aptalis CF Cycle For Life^® rides across the country, click here:http://www.cff.org/GetInvolved/CycleForLife/

 

Registration is easy! All you need to do is click the Registration button located on the right. Our easy website will prompt you through the process. Once you are registered - you will receive a confirmation email with account information. You may contact (615) 255-1167 if you need assistance or have questions.

Registration Fees:
January 1 - July 15, 2013 $25.00 registration fee
July 16 - August 1, 2013 $35.00 registration fee
August 2 - August 17, 2013 $45.00 registration fee

*Registration fee is in addition to your Pledge requirement of $165.

Check-in opens at 7:00 a.m. & Route opens at 8:30 a.m.
 

Minimum Pledge Requirement Policy: The minimum pledge requirement is due on or before event day. If you have met your minimum by the day of the event, we encourage you to keep fundraising. Reach for the stars and earn great prizes. Even though the minimum amount is due by the day of the event, you have one month after the event to earn a jersey or other cycle rewards. The average amount a participant raises is $650. Registration fees are non refundable and do not count towards your fundraising minimum. Fundraising is 100% tax deductable. Thank you for adding tomorrows for people with cystic fibrosis.

TIP - When registering you will be asked to state your fundraising goal (which you can change later). You may select any of the amounts from the pull down menu that are ABOVE the ride's minimum fundraising goal. If the minimum fundraising goal is not an option in the pull down menu, you will need to select the shaded block that is immediately above the minimum amount - and then type in any other amount above the minimum.


2013 CFF Yard Sale at the Clarksville Speedway & Fairgrounds

 

Please join us for the 2013 CFF Yard Sale at the Clarksville Speedway & Fairgrounds. Vendors Welcome. Shoppers: it is free to park and free to shop! Sellers: Your $40 donation to the CFF is 100% tax deductible. Please contact me for details. 931-980-8837

Volunteers are the engine of the Cystic Fibrosis Foundation and make progress possible. Each year, more than 250,000 dedicated volunteers devote their time and talents to help raise funds for research and medical programs. The CFF depends on the generosity of individual donors, corporations and foundations because no federal funding is received.

Join Team Clarksville in supporting the CFF's efforts to enhance and extend the lives of CF patients and ultimately to find the cure.

V

Miss me, but let me go.

This is a poem given to me by my Aunt Betty. I do not know the author. She is a soul set free. Betty had Cystic Fibrosis. Today, as I think of my birthday yesterday, I can't help but realize - I am the same age Betty was when CF stole her from us. I do miss you, Betty. My only solace is that you are no longer suffering. Spread your butterfly wings and soar - high above pain and sickness. I love you.

 

When I come to the end of the road
And the sun has set for me
I want no rites in a gloom-filled room.
Why cry for a soul set free?

Miss me a little–but not too long
And not with your head bowed low.
Remember the love that we once shared,
Miss me–but let me go.

For this is a journey that we all must take
And each must go alone.
It's all a part of the Master's plan,
A step on the road to home.

When you are lonely and sick of heart
Go to the friends we know
And bury your sorrows in doing good deeds.
Miss Me–But Let me Go!

 

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

Partners in Progress is an important initiative of the Cystic Fibrosis Foundation. Your donation can make a powerful difference in the search for new treatments and a cure, but we are in a race against time. On behalf of all people living with CF, and their families who love them, thank you for your generosity!

Our Butterfly Wings

 Just when the caterpillar thought the world was over, it became a butterfly. -- Proverb