Cystic Fibrosis - ProfilesArchive

About Me

Cystic Fibrosis is a genetic disease that affects about 30,000 kids and adults in the United States. The defective gene causes the body to create an abnormal mucus that clogs the lungs, creating risk for life-threatening lung infections. This mucus also affects the pancrease, prohibiting the body from absorbing necessary nutrients. The liver is also affected and the mucus can cause liver damage. 10,000,000 Americans unknowingly carry this defective gene and 1 out of every 3,500 live births are diagnosed with Cystic Fibrosis.The families living with Cystic Fibrosis have many things in common including constant physical therapy for the lungs, multiple pills taken every time they eat, continuous clinic and doctors visits and the biggest fear of living with the consequences of CF.According to the CF Foundations National Patient Registry, the average life span for someone with CF is in the mid-30's. Only, nearly 40% of the people who live with CF are over the age of 18. 95% of men with CF are sterile.The biggest goal of families, friends and anyone who understands CF, is to find the CURE. Please help with this mission, to make donations visit, www.cff.org.

My Interests

Families with Cystic Fibrosis develop interests that include getting the children involved in physical activities that stimulate lung function. Their interests also include educating others about CF, taking extra measures to protect their children from life threatening germs and adopting a therapy regimen that involves medications, vitamins, physical therapy and clinic and doctors visits. The main interest for families living with CF is to raise enough money to fund the research to find the CURE for Cystic Fibrosis.

I'd like to meet:

People who can make donations of money, time and spreading the word to educate others. Money buys research and research finds the CURE to Cystic Fibrosis. To make donations and learn about other contributions to help find the CURE to Cystic Fibrosis, visit www.CFF.org.

Heroes:

The people who invest their money, time and energy to finding the CURE for Cystic Fibrosis and the families who are surviving the disease every day.

My Blog

How to make donations . . .

It's fundraising time and I need sponsors! You can make donations on-line . . . Go to: www.cff.org/great_stridesLook up: Great Strides Walker, Amanda Key, Greensboro, NC on May 5thThank you for you...
Posted by Cystic Fibrosis on Mon, 02 Apr 2007 01:01:00 PST

SCREAMING!

This weekend, the family I consider my own, the family I help care for, is facing a new challenge in the CF life. 4 of the 5 children in the family have CF. On Friday, 2 of the girls are being admitte...
Posted by Cystic Fibrosis on Tue, 13 Jun 2006 05:50:00 PST

"Fast Lane to a Cure"

Tuesday, May 16th, 2006, Kevin Harvick sponsored a fundraising event, "Fast Lane to a Cure". Harvick and his wife attended and sat with Julie as she was the guest speaker. Julie is 14 and ...
Posted by Cystic Fibrosis on Wed, 17 May 2006 11:28:00 PST

Reason 9. & 10.

9. For the first time ever, CF research opportunities are being presented at a pace that is exceeding the CFF's ability to fund them. 10. Feel good that you are making a difference. ...
Posted by Cystic Fibrosis on Thu, 09 Feb 2006 04:34:00 PST

Reason 7. & 8.

7. The CFF has been praised by leaders at the National Institutes of Health. The CFF has been heralded as an excellent example of a group that works closely and successfully with medical r...
Posted by Cystic Fibrosis on Thu, 09 Feb 2006 04:30:00 PST

Reason 5. & 6.

5. The CFF has a clear vision. Because of its visionary focus, the CFF has brought top-notch scientists from many disciplines, medical institutions and corporations together uner one ...
Posted by Cystic Fibrosis on Wed, 08 Feb 2006 02:25:00 PST

Reason 4.

4. The CFF leverages investments to build a robust CF drug development pipeline. By fostering alliances with dozens of biotechnology and pharmaceutical companies through its nonprofit drug...
Posted by Cystic Fibrosis on Wed, 08 Feb 2006 12:07:00 PST

Reason 3.

3. The CFF is a leader. The CFF has taken a leadership role in the development of promising new CF drugs. Because CF is considered an orphan disease, most biotechnology and pharmaceu...
Posted by Cystic Fibrosis on Wed, 08 Feb 2006 12:03:00 PST

Top 10 Reasons to Support the Cystic Fibrosis Foundation

1. The Cystic Fibrosis Foundation is adding tomorrows every day to the lives of those with cystic fibrosis (CF). In 1955, when the CFF was established, children did not live to attend elem...
Posted by Cystic Fibrosis on Wed, 08 Feb 2006 11:58:00 PST