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!

Crosby @ 6 Months

{*I want to say thanks to everyone who sent me texts, emails, and comments (IG follows too) about my guest post on Carol's blog yesterday. I really appreciate all the loving support that you guys show us. Your encouragement means so much.}

Dear Crozzie Bear:

You are half a year old!

We don't think that you can get any cuter.

You roll over, sit-up, and stand with support.

Everything, and I mean everything, goes straight into your mouth.

You are very vocal (love your throaty little baby voice) and you still love to be held and snuggled, especially by Momma. 

You are not a good sleeper. We are trying everything but you still wake up every 1.5 to 2 hours. Baby, please learn to sleep better! For you sake and our sake!

You have really packed on the chub the past couple of weeks. We call you "Tubby" and I am so thrilled you are thriving! {This is a HUGE deal for CF babies.}

We love you more by the minute and are hearts are so full.

You love hanging out with your Daddy, checking the Hogs message boards:

Crosby is chewing on a teething toy called Zo-li. So awesome! Thanks to Kandace for the rec.

Bath time!

Chewing on a frozen wash cloth (see what I mean by everything goes in the mouth!)

Blue Eyes!

Two of your favorite things to do: Hanging with Daddy (again!). And loving on Mom.

So now for a little fun and to get a little interaction with the Crosby Show Fans! Who do you think Crosby looks like? His Momma? His Daddy? Both? Please respond in the comments below {If you respond on Facebook, I can't see!}

 Love,

Carmen

Guest Posting on a Friend's Blog

So a few weeks ago, one of my oldest friends, Carol Spenst (née McCulley) asked if I would write a guest post on her blog found here.

Carol and I grew up together. We went to elementary school together and I was very close to her and her family, as her mother took care of me before and after school. I absolutely loved her family and the time I got to spend with them. Sadly, Carol moved to Kansas when we were in 7th grade. I was so sad to see my best friend go. We kept up with each other a little in high school (thank you AOL) and college. 

Funny story, I once went to cheer on my own UCA Bears at a soccer game at John Brown University, where Carol attended college. I didn't have her number, so I went over to the JB student section and asked if anyone knew Carol McCulley. A guy stood up and said he did and I told him I was an old friend and asked him to take me to her. I surprised her in her dorm room. We took this picture:

Carol ended up back in Central Arkansas after she and her husband, John, opened up a Chik-fil-A in Little Rock. So glad that she lives here again and that I still get to call her my friend.

Carol is an amazing writer and you will love her ADORABLE family. Carol is insightful, uplifting and encouraging. She is one of the sweetest gals I know. And I can attest to you that her sweetest is 100% real.

I won't self-deprecate out of fear of appearing disingenuous, but I was surprised she would want me to write something for her space but at the same time, I was truly honored. 

Sometimes I am a little scared to hit publish after drafting my own blog posts for fear of how what I have written will be perceived. I always try to be super honest, and let's face it, there is vulnerability in transparency. It's even scarier to do so when someone else will be hitting the post  button. Carol asked me to write about something I have mentioned on here before but never in detail - my faith. I was tested after Crosby was diagnosed with CF and it isn't a pretty story. But it's real. If you're interested, follow the link here.

Love,

Carmen