Sixty Five Roses Was Taken

"65 Roses" is what some children with cystic fibrosis call their disease because the words are much easier for them to pronounce.. Sixty-five Roses, as a blog address, was taken, so we went with sixty six. The reason I chose sixty six instead of some other creative name, is that I'm hoping with everything I have, that by the time Drew is talking, we will get to explain that sixty-five roses was a thing of the past, that we've moved on :)

Going forward, I shall refer to the disease only as Sixty-five Roses.

Let me tell you what we know and understand about this disease. First, there is no cure. Sixty-five roses is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

• clogs the lungs and leads to life-threatening lung infections; and
• obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with sixty-five roses lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Symptoms of Sixty Five Roses

People with CF can have a variety of symptoms, including:

• very salty-tasting skin;
• persistent coughing, at times with phlegm;
• frequent lung infections;
• wheezing or shortness of breath;
• poor growth/weight gain in spite of a good appetite; and
• frequent greasy, bulky stools or difficulty in bowel movements.

Statistics

• About 1,000 new cases of sixty-five roses are diagnosed each year.
• More than 70% of patients are diagnosed by age two.
• More than 45% of the CF patient population is age 18 or older.
• The predicted median age of survival for a person with CF is more than 37 years.

The Sixty-five Roses Foundation (www.cff.org) has built a dynamic "pipeline" for the development of more new potential CF therapies than ever before. To treat a complex disease like CF, therapies must target problems in the airways and the digestive system.

In the CF drug development pipeline, there also are promising new therapies designed to rectify the cause of CF — a faulty gene and/or its faulty protein product.

If you are interested, you can view and read about some of the drugs currently in the pipeline by visiting http://www.cff.org/research/DrugDevelopmentPipeline/.

The purpose of my blog is to raise awareness and support for the CF Foundation. Very sadly, since sixty-five roses is considered an orphan disease, they receive no federal funding for their programs and depend exclusively on individual and corporate donations.

Please consider making a donation. Drew's life literally depends on it. Research has come a LONG way in a short time, and hopefully, very hopefully, this disease will change from a life-ending disease to a chronic disease to a cured disease in his lifetime.

http://www.cff.org/GetInvolved/ManyWaysToGive/MakeADonation/