Christmas and Great Strides

The Cystic Fibrosis Foundation's largest fundraiser, Great Strides, is in Little Rock on May 21, 2016 this year. SAVE THE DATE. 

Please join the Crosby Show team by clicking ---> http://fightcf.cff.org/site/TR/GreatStrides/9_Arkansas_Little_Rock?team_id=46609&pg=team&fr_id=5060

By registering and donating you will be giving Crosby the best gift he could receive - hope for more tomorrows!

I have talked about Cystic Fibrosis being called an "orphan disease" because so few people have it. This means that the value to pharmaceutical companies to invest money in new therapies and treatments just isn't there. Developing a single new drug can cost a billion dollars, so pharmaceutical companies want to create blockbusters for common diseases to maximize the return on their investment.

The Cystic Fibrosis Foundation came up with something called "Venture Philanthropy", where they invest our fund-raised money with the pharmaceutical company to do the research and create the drug, absorbing the early financial risk involved in drug development as a way to entice for-profit companies to get involved in cystic fibrosis research. Amazing things are happening. There are now two drugs on the market, Kalydeco and Orkambi, that target the underlying cause of CF for about 54% of the CF population.  Because of this successful business partnership, the CF Foundation has invested another $75 million toward finding a cure for the other 46% of the CF population. 

Although Crosby does not benefit directly from the use of Kalydeco or Orkambi because of his specific gene mutations, the picture is much brighter as we learn more of the significant impact both drugs have on those who do benefit from them and the science behind the breakthrough represents far greater confidence and progress than we have seen to date..  We know we are close and we are committed to running through the finish line…and then throwing the greatest party of all time! 

I have asked God many time to take CF away from Crosby. But I also ask for His will to be done, not mine. Despite the devastation of this disease, we know that God has a plan for Crosby and our family. We are thankful for the medicines and medical advances made each year in large part by those who support the CF Foundation through fundraisers like the Great Strides walks. 

Lance and I are so thankful for all our friends and family in joining our journey of faith and fight against this disease. We have some exciting things planned for fundraising in 2016!

Join the Crosby Show's Great Strides team today, for this guy:

With all my love,

Carmen

Dad's Birthday

Today is my Dad's birthday. I'm not quite sure why it being his birthday stings, but it does. I guess I just miss him and the date is a glaring reminder that he is not here.

Most days, I'm happy and productive and I think about my Dad with a smile on my face. Other days, I wake up from having a dream about my Dad and I'm moody as hell. Some days, I nearly forget that my father died at all. Other times, I'm angry that people who are twice my age still have their fathers. Or I'm resentful of people who are my age who take having their dads around for granted. Once, I silently cried at my desk at work while I overheard a coworker talking to his father on the phone. When older people who have lost a parent reached out to me and told me they understand, I appreciated the sentiment, but they can't possibly understand the full depth of what I experienced. Losing an elderly parent after your own children are grown is not the same thing as losing your dad before your children are born.

A while back I bought the sweetest little book for Crosby, Wherever You Are: My Love Will Find You by Nancy Tillman. My Dad understood the importance of explaining to your children (to everybody, really) the unconditional and immeasurable love you have for them. He did that repeatedly and consistently for both me and my sister (as did my Mom!). I think that is his legacy. I am so grateful  that my parents loved me powerfully, unconditionally. No matter what challenges I face, that is source of confidence. I hope I am passing that on.

Here is some of the beautiful, moving text and if I close my eyes, I can hear him saying the words:

I wanted you more

than you ever will know

so I sent love to follow

wherever you go.

It's high as you wish it. It's quick as an elf.

You'll never outgrow it...it stretches itself!

So climb any mountain...

climb up to the sky!

My love will find you.

My love can fly!

...

And if someday you're lonely, 

or someday you're sad, 

or you strike out at baseball, 

or think you've been bad...

just lift up your face, feel the wind in your hair.

That's me, my sweet baby, my love is right there.

...

If you're still my small babe
or you're all the way grown,
my promise to you
is you're never alone.

You are my angel, my darling,

my star... and my love will find you,
wherever you are.

~ Nancy Tillman

Happy Birthday, Daddy.

Love,

Your Princess