walkforgrace.com

Cystic Fibrosis affects approximately 30,000 children and adults in the United States. According to the Cystic Fibrosis Foundation (CFF): ‘A defective gene causes the body to produce an abnormally thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. These thick secretions also obstruct the pancreas, preventing digestive enzymes from reaching the intestines to help break down and absorb food.’ CF is a genetic disorder passed on by a recessive gene in each parent. You cannot catch CF just like you cannot catch heart disease.

What does this mean for those with the disease? It means a lifetime of treatments and medications on a daily basis. For instance, Grace must have at least two clapping treatments along with breathing treatments every day. She also must take an enzyme replacement drug before every meal. It can also mean lung transplants, deadly bacterial infections and can lead to diabetes. Although Grace has been lucky so far and not spent any time in the hospital, most CF kids spend a significant amount of time in the hospital getting antibiotic treatments to fight infections. What may be a normal cold to a healthy child can turn into a terrible infection for a child with CF.

Why is it important to give to CF?

CF doesn’t show up on the radar of most pharmaceutical companies. There isn’t much money is finding a cure for CF. With ‘only’ 30,000 affected, a cure or new drugs for treatment wouldn’t yield the big bucks that the drug companies need. Therefore, most CF research and discovery is funded by the Cystic Fibrosis Foundation. When the CF Foundation was formed in 1955, most children with CF didn’t live to be school age. Now the average age is 32 with many adults living into their 50′s and 60′s. This foundation is one of the top charities in the world. This Forbes talks about what the CF Foundation does to find a cure. Their business model is pretty amazing. They were also rated very highly by SmartMoney. So, why is it important to give to CF? Frankly, donors are where virtually all the funding comes from.

Want to learn more?

The best and most reliable source regarding CF can be found at the CF Foundation’s web site. Although there are many other sites on the internet about CF, be careful where you visit. Not all sites have the facts straight. I have visited sights that say the average patient dies in their teens. Imagine learning your child has CF and reading that on the internet! Check out the CF Foundations site. It has a wealth of information.