Cystic Fibrosis News From Medical News Today

We are participating in the Pepsi Refresh Project this month to win funds to Help Babies with Cystic Fibrosis Breathe Easier. Each month, Pepsi awards over $1 million in grants to worthy causes, chosen by people like you.We need your vote!

We are competing for a $250,000 grant to fund a clinical study about the effect of hypertonic saline treatment in infants.

You may have heard of hypertonic saline, an inhaled saltwater treatment that reduces lung infections and hospitalizations for adults and children with CF. Now we want to see how this treatment may work for newborns. Hypertonic saline, if proven effective in this research study, would give infants with cystic fibrosis a better chance at a long, happy and healthier life.

You can make a difference. It’s simple to vote.

Go to www.refresheverything.com/helpbabiesbreathe, to cast your vote for our project. You can vote once a day through the end of September, so vote today…and vote often!

Tell your friends – the more votes, the better our chance of winning!

Post the link to your Facebook page or blog, share on Twitter and email your friends.

Every vote helps bring us closer to a brighter future for babies born with CF.

Thank you for your support!

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Thank you for voting! Why not help promote this idea?

http://pep.si/c8syLT

Cystic Fibrosis News From Medical News Today

Cystic Fibrosis News From Medical News Today

Despite rain cancelling bike ride, concert and pig roast are well attended in Mountain Top.

IAN CAMPBELL Times Leader Correspondent MOUNTAIN TOP – Despite the rain, the Third Annual Country Concert for Cystic Fibrosis went ahead Sunday at the American Legion Post 781 grounds.

Safety concerns may have halted the planned 65-mile motorcycle ride through the Conyngham Valley, but in all other respects it was the event that organizers had hoped for, Bernie Ceaser said. The reality was that the large number of sponsors organized by Carol Davis meant that the event had covered its costs and broke even before the day even had begun. Ceaser and Davis are two of a large group organized to raise funds for the Cystic Fibrosis Foundation in the name of Paige Ceaser, Ceaser’s 4-year-old daughter who suffers from the disease, and each year the event has grown stronger and larger. Last year, the concert, motorcycle run and pig roast raised more than $10,000 for the foundation, Bernie said. A lot of that is due to the work done by Davis, who is Paige’s aunt. She has spent months organizing each concert one after the other. “She’ll start organizing the 2011 concert tomorrow,” Bernie said. In addition to five bands, playing from 1 to 9 p.m., Carol Davis had organized representatives from Geisinger, Frontier and Bayada; arranged for dozens of raffle baskets as well as a grocery cart full of goods from Carone’s market and organized dozens of volunteers. She had help. She said more than 30 friends and family worked with her each year to arrange the event. Walking around the site, it was clear that organization was the event’s strong suit, but when you’ve spent 18 hours cooking 350 pounds of dressed pork, you need to have organization – the pork had to be eaten once it was cooked, and rain couldn’t be allowed to prevent that. Last year, the event drew 500 people, and by early afternoon, as the rain was easing up, it was already clear that the concert had drawn at least 200 people, with the likelihood of more to come. Kids were amusing themselves with face painting, seeing what they looked like after conversion to a cat or a lion; the pony rides and therapy animals from Young’s Funny Farm in Berwick. Despite the rain, at $2 for two throws, the man in the dunk tank was being dropped on a fairly regular basis. Carol Davis said that despite the weather, no bands had cancelled, and she thanked everyone who came out to support the event. And just before she was called to organize something else, she noted the date of the 2011 concert, and said she hoped it would be dry. That date is Aug. 21, 2011.

CF advocates won a tremendous victory when the Senate passed the “Improving Access to Clinical Trials Act,” which will prevent people with CF from having to choose between taking part in important clinical trials and keeping their health care coverage. But there is still work to be done: the bill must now pass the House of Representatives.

Contact your Representative to ask that the House pass S. 1674 BEFORE Congress adjourns.

The Make Every Breath Count campaign continues to make a difference for CF. Michigan Senator Debbie Stabenow came to the home of thirteen-year-old Emily Bonnell and her fifteen-year-old sister, Molly Bonnell, who both have CF, to hear what their lives are like with cystic fibrosis. Molly and Emily discovered how easy it is to make an impact in Washington, DC and the importance of their CF advocacy– all without leaving their living room!All over the country, from Michigan to Kansas to Arizona, advocates like the Bonnells are meeting with their Members of Congress to ask them to us help find a cure for cystic fibrosis.

We’re closer than ever to the finish line in our fight to help more people participate in CF clinical trials, but we still need your help!

1. Even if you have already asked your Representative to sign on to the bill as a co-sponsor, write your Representative again to ask him or her to pass the “Improving Access to Clinical Trials Act” today!
2. Sign up for Make Every Breath Count today! Once you register, your State Advocacy Chair or a Foundation staff person will provide you with all of the tools and support you will need every step of the way as you meet with your elected officials.

Thank you again for your help and determination! Together, we are making a difference for people with CF.

MOUNTAINTOP, LUZERNE COUNTY – A four-year-old girl was the center of a big party, Sunday, in Mountaintop.

The family of Paige Ceaser held their third annual country concert and motorcycle ride at the American Legion there. It’s all to raise money for the disease Paige lives with, cystic fibrosis.

Paige Ceaser was diagnosed with cystic fibrosis when she was born and since then her family has hosted this big event in mountaintop, which they say is growing every year.

Country music played on despite the rain. And the crowd came out for four year-old Paige Ceaser who might be a little shy when asked to sing at her party, but is a fighter when it comes to cystic fibrosis.

“Oh she is very active right now. She is playing soccer,” said Bernie Ceaser, Paige’s father.

Paige’s family hosts this event to raise money for The Cystic Fibrosis Foundation.

“It’s a genetic disease that affects the lungs, thick mucus will build. Over time children have a hard time fighting diseases,” said Ceaser.

There is no cure, but the family hopes that through events like this they can fund research to find one.

“The median age was 18, now about 40 percent are making it to 30 years old, which is great. But it is not wonderful, but it is great. So at least they are making strides,” said Carol Davis, Paige’s aunt.

The party in Paige’s honor is making strides. The family says each year it grows. Vendors and sponsors give a portion of their sales to The Cystic Fibrosis Foundation.

“It’s overwhelming. People could be anywhere today and they chose to be here with us; try to help us out with this cause,” said Bernie Ceaser.

A motorcycle ride is part of the event each year, but it was canceled Sunday because of the weather.

Care of: pahomepage.com

Hi everyone ,,,Just thought I would e-mail and say we have tents and pavilions so let the weather people say what they want we will have the CF Benefit COVERED…MOTORCYCLE RIDE is going on in the AM DUNKIN DONUTS is our morning sponsors so come and get some good COFFEE & DONUTS…take a 65 Mile SHERIFF Escorted,WVMC LED RIDE & don’t forget the PIG ROAST is COOKING….THE BENEFIT>>>We have been cooking ,setting up and praying for a good day tomorrow (Sunday) and you can help by coming to the benefit event…GREAT MUSIC, GOOD FOOD,GREAT PRICES LIKE $1 Beverages….LOTS of ACTIVITIES & VENDORS AWAIT YOU if you just take a chance and come up to the CF CONCERT

Cystic Fibrosis News From Medical News Today

Congratulations! Last night, the U.S. Senate passed S. 1674, the Improving Access to Clinical Trials Act, by unanimous consent.

This achievement would not have been possible without the letters written and calls made by dedicated and committed CF Advocates like you.

All that remains now is for the House of Representatives to pass the bill as well. Even if you have already asked your Representative to sign on to the bill as a co-sponsor, now is the time to tell the House to pass the Improving Access to Clinical Trials Act.

The Improving Access to Clinical Trials Act would allow people with CF who are on public benefits to participate in important clinical research without losing their health coverage.

Tell your Representative to pass the Improving Access to Clinical Trials Act today!

Thank you again for your help and determination! Together, we are making a difference for people with CF.

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

Visit Your Representative in Your Community

YOU can help more people participate in CF clinical trials, increase awareness of CF, and foster relationships between members of the CF community and Congress by signing up for Make Every Breath Count, the CF Foundation’s third annual national advocacy campaign.

Six year old Ella Deveaux kicked off the 2010 Make Every Breath Count campaign by meeting with Senator Ron Wyden in Oregon. “It was a wonderful experience for Ella to meet with Senator Wyden,” said her father, Oregon State Advocacy Chair Jon Deveaux. “Our family is so grateful for his efforts to ensure new therapies for patients who need them, like Ella.”

Sign up for Make Every Breath Count to speak out for CF. Once you register, your State Advocacy Chair or a Foundation staff person will give you the tools and support you will need to meet with your members of Congress.

24 Teens Make Their Voices Heard on Capitol Hill during Teen Advocacy Day 2010

On Thursday, June 24, two dozen teens from all over the country came to Washington, DC to advocate on behalf of their siblings, cousins, and friends with cystic fibrosis.

Thanks to the combined power of your efforts and the advocacy of these teens, 14 additional members of Congress signed on to cosponsor the “Improving Access to Clinical Trials Act” within days of the event, with more working to join the legislation soon.

Your calls, emails, letters, and meetings are working! Please keep up the pressure by:

1. Registering for the Make Every Breath Count campaign.
2. Calling and writing your senators about the clinical trials bill, and, ask your friends, family, and co-workers to do so as well!

You can help ensure new therapies for CF and other diseases move swiftly from the research stage into the hands of patients who need them.

Thank you for your support!

Cystic Fibrosis News From Medical News Today

Just a little SHOUT OUT to the great supporters and sponsors that are helping us out this year. We know its tough economic times for everyone, and we truly appreciate everything being done to make this years event our best ever.

Please, please support our sponsors! Thank them, spend your money with them and tell them you appreciate what they do for their community.

While, I can’t list everyone’s logo right now, I do want to welcome the following NEW sponsors for 2010!

And don’t forget, you can click HERE for all the event details and HERE to Pre-Register and save on the official ride T-Shirt!

See you in August!

Journal of Cystic Fibrosis

Cystic Fibrosis News From Medical News Today

Cystic Fibrosis News From Medical News Today

Cystic Fibrosis News From Medical News Today

Cystic Fibrosis News From Medical News Today

Cystic Fibrosis News From Medical News Today

Cystic Fibrosis News From Medical News Today

Cystic Fibrosis News From Medical News Today

Urge Your Senators to Pass the “Improving Access to Clinical Trials Act” Thanks to your hard work, the Improving Access to Clinical Trials Act now has more than 120 cosponsors in the House of Representatives! Your efforts have gotten us one step closer to helping new therapies for CF and other diseases move swiftly from the research stage into the hands of patients who need them.

However, we’re not done yet. Only 10 Senators have signed on to support this bipartisan bill, and we’re going to need a lot more to push the Improving Access to Clinical Trials Act across the finish line.

It’s up to you to ensure that both of your Senators are on board! Your efforts to get support for this bill in the Senate are more critical than ever.

Help ensure the bill passes in the Senate by:

1. Emailing your Senators and asking them to cosponsor and support the bill’s passage in the Senate.
2. Taking the additional step of calling your Senators to ask for their support.

Urge your Senators to add their names in support of the clinical trials bill and to pass it in 2010!

Thank you for your support!

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Cystic Fibrosis News From Medical News Today

Cystic Fibrosis News From Medical News Today

Making “Great Strides” in Conquering Cystic Fibrosis

WILKES-BARRE, LUZERNE COUNTY – Kirby Park was filled with walkers of all ages on Saturday.

They were there with one purpose in mind — to help conquer Cystic Fibrosis. It’s a life-shortening disease that strikes 30,000 children and adults — a disease that causes great difficulties with a person’s respiratory and digestive systems. “People with cystic fibrosis in order to live a healthy life face challenges every day… treatments to clear their lungs, enzymes before they eat,” said Linda Capozello.

She is Executive Director of the Cystic Fibrosis Foundation’s Northeastern Pennsylvania Chapter. She helped organize this Great Strides walk — a fund-raiser that’s drawn about twice as many walkers as last year. “Certainly when you have a childhood illness, people do come around and are very generous and kind and supportive,” said Capozellol. Many people decided to form teams for people they know who are stricken with cystic fibrosis. Crestwood 7th Grader Bethanie Jones formed Team Macho Brothers. She rounded up some friends to walk on behalf of her two cousins who both have cystic fibrosis. “I feel bad because they don’t really have a big life span and, like, I want them to survive as long as they can,” said the Luzerne County girl. “I want them to be normal and not have to worry about it when they get older.”

Getting older wasn’t much of an option for children with cystic fibrosis a half-century ago. Few lived long enough to enter grade school. But, today, many make it into adulthood. “The average life expectancy is now 37 years of age,” said Capozello. “But we’re making wonderful strides and we’re pushing that back literally by years.”

Giving people with cystic fibrosis — and their families — reason to keep trying to find a cure — one step at a time. The goal was to raise $35,000 at the Great Strides walk. All of the money raised goes toward research and treatment of cystic fibrosis.