An Orphan Disease

Cystic Fibrosis is called an orphan disease because it affects such a small percentage of the population. If you recall from my post here, only about 1,000 people in the U.S. are newly diagnosed with CF every year.

"Rare disease" would probably be a better way to describe it but orphan disease is used because CF is a type of disease which has not been "adopted" by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.

Basically, the big drug companies (or rather ALL of the drug companies) lack a sufficient profit motive to invest in the research and develop new drug therapies for CF. Because so few people have CF, nobody wants to spend the money on research for medicine because there are not enough patients who would then offset that expense by buying the drugs, when they became available. 

Without pharmaceutical companies invested, this also means that the U.S. Government doesn't fund research for a cure.

So where do we turn? 

Privately-funded research has created most of the medicines and treatments that have been able to extend the average life expectancy of the 30,000 Americans living with CF.  Private donations made to the Cystic Fibrosis Foundation have funded nearly every single CF drug available today.

This means that if there is any hope for future treatments and a possible cure, the  way it will be developed is from donations to the Cystic Fibrosis Foundation.

90 cents of EVERY DOLLAR that you donate to the CF Foundation goes directly towards drug development, research, and advocacy. That's huge!

I want a permanent fix for this fatal hereditary disease. Will you help me? Will you help Crosby? This little dude is waiting for a cure. He's waiting for the expiration date on his life to be lengthened.

You can help by signing up for the GREAT STRIDES walk benefiting the Cystic Fibrosis Foundation on May 17th. If you've already signup and/or donated, from the bottom of my heart, THANK YOU. Please encourage your own friends/family/coworkers to join us!

If you're reading this blog, I would love to see you there. Please join our team by clicking this link and registering. Registration is free.

Walk for Crosby.

Join us.

Join us so that someday CF stands for CURE FOUND.

Love,

Carmen

P.S. HUGE THANK YOU TO EVERYONE WHO PARTICIPATED IN THE COMPLIMENTARY MEAL LAST WEEK AT BJ'S RESTAURANT. BJ's is an ongoing sponsor of the CF Foundation. I thought that all donations last week went to the national CF organization but I found out that ALL of the money actually went to our local Arkansas chapter, which sponsors the very CF clinic Crosby goes to. So if you dined at BJ's last week and donated, whatever you gave directly benefited our little dude. How cool is that?? Lance and I went at lunch and I have to say our meal was fabulous. I also got to show our sweet waitress (who was in training) pictures of Crosby and we chatted about CF and how important the donations are to folks like us!