It’s almost time…

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Posted by DC Admin | Posted in Country Concert for Cystic Fibrosis | Posted on 12-08-2011

Can you believe it?

We can’t.

We’ve been hard at work getting everything ready for the 4th Annual Country Concert and Motorcycle Ride for Cystic Fibrosis.

The ride, the concert, the food… the fun! Lots to do for everyone in the family including the National Guard rock wall (weather permitting), Young’s Funny Farm therapy animals to pet and feed, basket raffles (aka tricky trays!) Dream Katchr Pony Rides to enjoy, The Moonwalk Guy’s Dunk Tank!, Fun Faces Face Painting, Dave’s Original Tattoo (got ink?), Bike and Rider portraits by GAC Photography and Lisa Ceaser Photography, instant bingo, 50/50, a delicious Pig Roast from Hilltop Farms (while supplies last!), and $1 Coors and Coors light!

There will also be great retail vendors on site who are donating portions of their proceeds that day to our event. Miche bags, Celebrating Home, Man Cave Gifts, 31 Gifts, Lia Sophia, Sunflower Enterprise, Frontier Communications, Good Ol’ Days Hemp Shop, Custom Bead Creations, and much more!

Celebrating Home advisor, Geri Berger has set up a website where ANYONE can order a beautiful candle and proceeds go to Paige and the Country Concert. Click HERE.

T-Shirts are in hand and ready to be ordered. All sizes $10, including Women’s tank tops (NEW THIS YEAR!) in sizes S, M or L. Email star8278@gmail.com to order yours and have it in time to wear that day. I want to see a sea of grey tshirts that day! Let’s unite to fight CF!



Join Make Every Breath Count and Speak Out for CF

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Posted by DC Admin | Posted in Country Concert for Cystic Fibrosis | Posted on 27-07-2011

“You have to stand up. You have to visit your congressman.” That’s Rep. Edward Markey’s message for everyone who wants to make sure we find a cure for cystic fibrosis.

This summer, you can meet with your elected officials in your hometown and inspire action in our fight against CF by signing up for Make Every Breath Count, the CF Foundation’s annual national advocacy campaign.

Join us for Make Every Breath Count! Schedule a meeting with your representative in your hometown today.

Watch Rep. Markey (D-MA), the Co-Chair of the Congressional Cystic Fibrosis Caucus, talk about how you can make a difference by visiting your Member of Congress.

Now is the time to stand up. We need your help to ensure we have the support in Congress to continue vital CF research, make sure new therapies are approved quickly and safely, and guarantee that everyone with CF has access to the care they need to live.

Join us! Schedule a meeting with your representative in your hometown today.

As Congressman Markey said, “our goal should be that CF stands for Cured Forever.”

Thank you for all that you do! Together, we are making a difference in the lives of people with CF.

Mary B. Dwight
Vice President for Government Affairs
Cystic Fibrosis Foundation
(800) FIGHT CF
publicpolicy@cff.org

MAKE AN IMPACT ON CF

SPEAK OUT
Get Started
GET INVOLVED
Sign Up
INSPIRE ACTION
Reach Out

 


To learn more about the CF Foundation, visit www.cff.org.

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Cystic Fibrosis Foundation, 6931 Arlington Road, Bethesda, MD 20814



New this year…

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Posted by DC Admin | Posted in Country Concert for Cystic Fibrosis | Posted on 27-07-2011

We are very proud to offer you something new at this year’s 4th Annual Country Concert and Motorcycle Ride for Cystic Fibrosis.

Bike & Rider Portraits

$10 gets you a ready to display 5×7 professional portrait of you and your bike! What better time, it will be all polished up and ready for the ride.

Available for anyone, you do not have to have a bike to participate!

Listen for the announcement by D.J. Keystone Jukebox shortly after the riders arrive at the American Legion.

Pictures will be taken on a first come, first serve basis somewhere on the grounds of the Legion with the nicest backdrop. After they are processed, printed and matted, listen for another announcement letting you know when and where to go and pick up your picture before you leave!!!

Thank you to Lisa Ceaser Photography and GAC Photography for donating their time and talent for this great cause. All proceeds will go to the Cystic Fibrosis Foundation.



2011 Country Concert for Cystic Fibrosis

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Posted by DC Admin | Posted in Country Concert for Cystic Fibrosis | Posted on 16-07-2011

Country Concert for Cystic Fibrosis

Country Concert for Cystic Fibrosis



VX-770…Good news

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Posted by DC Admin | Posted in Country Concert for Cystic Fibrosis | Posted on 29-03-2011

A few weeks ago, we announced exciting results from the clinical study of a new treatment for cystic fibrosis called VX-770.  I am writing today with more great news.

As you may recall, VX-770 was tested in a Phase 3 clinical trial with CF patients ages 12 and older who carry at least one copy of a CF mutation called G551D. Patients who took the drug showed dramatic improvements in lung function and other key measures of the disease.

This morning, we announced positive results from a separate ongoing Phase 3 trial of VX-770 in children with cystic fibrosis ages 6 to 11. Children who took the drug showed marked improvements, similar to those shown in the adult trial.

In both age groups, average sweat chloride levels of patients on VX-770 dropped toward normal—a sign that the drug is impacting the underlying defect in CF.

VX-770 is being developed by Vertex Pharmaceuticals, and was discovered in collaboration with the CF Foundation.

Vertex plans to submit a New Drug Application to the Food and Drug Administration with the hope of approval sometime in 2012.

Learn more about VX-770.

These results represent a major step forward in the search for a cure and control for cystic fibrosis. Thank you for all of your efforts to help bring us closer to our goal.



Tell Congress to Fully Fund Agencies that Research and Approve CF Therapies

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Posted by DC Admin | Posted in Country Concert for Cystic Fibrosis | Posted on 07-03-2011

Congress is currently making tough decisions about cuts to government programs. These are difficult economic times, and hard budget choices can’t be avoided.

However, we need to ask our elected officials to cut smartly. Now more than ever, we need to make sure that key government agencies have the resources they need to sustain momentum for research and streamline the drug approval process.

Ask your Members of Congress to preserve crucial funding for the Food and Drug Administration and the National Institutes of Health

Less than two weeks ago, the CF Foundation announced exciting results from the clinical study of a new treatment for cystic fibrosis known as VX-770. The potential therapy now moves to the Food and Drug Administration (FDA) for final review and approval.

If the FDA faces heavy budget cuts, it will take much longer to move promising potential therapies like VX-770 into the hands of patients. That is added time that many CF patients and people with other diseases cannot afford.

Similarly, the National Institutes of Health (NIH) performs crucial CF research. They are currently creating a new center to help develop scientific discoveries into new medicines.

If the NIH faces significant budget cuts, these breakthroughs may never reach people with CF and other diseases. These potential cuts jeopardize our goal of finding a cure for CF.

Ask your Members of Congress to support vital funding for the FDA and NIH

Thank you! Together, we are making a difference for people with CF.



4th Annual Country Concert and Motorcycle Ride for Cystic Fibrosis

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Posted by DC Admin | Posted in Country Concert for Cystic Fibrosis | Posted on 01-03-2011

Mark your calendars…

This year’s 4th Annual Country Concert and Motorcycle Ride for Cystic Fibrosis will be held on Sunday, August 21, 2011!!

We’re working hard to firm up the lineup of entertainers. And as we do, we’ll post a little vignette of each band for you to enjoy every week or so.

First up is FARMERS DAUGHTER!

We’re very excited to have them back again this year. Check them out on Facebook and their Website.

George – Lead Vocals, Guitars
Mandy Lynn – Lead Vocals
Phil – Drums
Greg – Bass
Christine – Violin
Trisha – Vocals
Tony – Guitar, Mandolin

And finally, don’t forget to join us April 30th, at the Shalimar in Mountaintop for our annual fundraiser. DJ’s Carol and J.T., basket raffle, jello shots and much more.