Tuesday, July 28, 2015

Derby Time

Save the Date for the Second Annual Team Bass Home Run Derby!


You may remember from last year that Lance and I hosted a Home Run Derby during his softball tournament to raise money for the Cystic Fibrosis Foundation. Well, we are doing it again this year, with a couple of changes!

The CELEBRITY HOME RUN DERBY is on Thursday, August 6th at 7PM. This is the event that all of The Crosby Show fans need to plan on coming to. We have convinced a group of local celebs to come bat and raise money for CF. The event will be at Reservoir Park in Little Rock and is free, with a suggested donation of $5. We will have cold drinks for sale too! Every dollar raised will go directly to the Arkansas Chapter of the CF Foundation. 

The celebrity participants include:

Dustin Moseley 
Jay Sawatski 
Coach Johnny Rice
Steve "Wildman" Wilson
JJ Meadors
Sarah Fortner
RJ Hawk
Eddie Armstrong
Chris Kane
And a few more!

It will be a hot evening, but come out and support us anyway!!

WHEN: Thursday, August 6, 2015, 7PM to 9PM. 

WHERE: Reservoir Park. The ball field is in the back and you can park by the tennis courts. We are blocking off the top part of the parking lot behind the field.

RULES: Each celebrity will get 15 balls, with the first 10 being regular balls and the last 5 being "money balls" that count as 5 home runs for each ball that is hit over the fence. There will be a first, second and third place winner. 

FUNDS: We are asking that each celebrity raise a minimum of $50.00 for the event. Every dollar raised will go directly to the Arkansas chapter of the Foundation. 

SPONSORS: Our celebrities need sponsors! Sponsors can hang a banner at the ballpark for the event and distribute any flyers/handouts they wish. 

SPECTATORS: We are not charging for the public to come watch the Derby but have a suggested donation of $5. Everyone is welcome!!

WE WILL SEE YOU THERE!



Friday, July 24, 2015

{Great} Grandpa

Crosby was fortunate enough to have been born with four of his great grandparents alive. Lance's dad's father passed away last Sunday morning at the age of 91. Grandpa was a WWII Veteran and was on Utah Beach during the Normandy invasion. He wasn't a man of many words, but he was kind and loved God and his family with all of his heart. He will be missed.

4 Generations of Smiths.

And today he joined up with Jesus

Wearing shiny pearl snaps

We sang a few gospel hymns 

And then the soldier played taps

I bet he's walkin' with Pete down the street paved with gold

Showin' off his brand spanking new wings

And his barbed wire halo

{Aaron Watson}


John Edward Smith
June 9, 1924 - July 19, 2015


Thursday, July 2, 2015

Orkambi Announcement

Praise Father God from Whom all blessing flow!

Today, July 2, 2015, the FDA approved Orkambi, the second drug developed by Vertex to counteract the underlying genetic defect that causes Cystic Fibrosis, as opposed to treating symptoms.


Orkambi has only been approved to treat patients who have two copies of the most common mutation, known as F508del. The initial approval is only for patients 12 and older, but will be available for about 8,500 people.

Can you imagine how those 8,500 people feel today? Can you imagine how their families feel? I am so happy for each and every person who's lives were literally changed today. In my mind I picture a mother and father with a 14 year old boy who has CF. They have watched him struggle for nearly his entire life to grow, thrive, breathe and just be a little boy. They have stayed up countless nights listening to him cough, they have fought hard for weight gain and felt crushed when he required a feeding tube. The mom and dad have shed tears in CF clinic rooms as his lung function numbers declined, and held their breath waiting for cough cultures to come back, only to have to face another new bacteria growing in his lungs requiring IV antibiotics. They have missed work, school, holidays, family gatherings because of hospitalizations. Their 14 year old has always known that he is different and has been left out of sports, sleepovers, birthday parties, school activities, all because of infection risks or because he had to do treatments or because he was just too sick to participate. I can picture all of that, but I cannot imagine how they must have felt yesterday hearing the news that there is now a drug to treat the underlying cause of their son's CF. I imagine that today was probably one of the happiest days for them. What hope for his future was ignited today? What burden was lifted off their hearts? I can only imagine. Praise the Lord!

Orkambi is not considered a cure because it still requires the patient to take the medication daily in order to combat cystic fibrosis, and it is less effective than Kalydeco is for patients with gating mutations. However, it is a significant step forward and it was all made possible because of the investment in research by the Cystic Fibrosis Foundation. 

Crosby will not benefit from Orkambi because he does not have the mutations that it affects. However, it is a huge step forward in research alone. Right now the Foundation is investing in  more research to pioneer new technologies to repair the defective CF gene. Kalydeco and Orkambi are just the beginning. 

I am so thankful for the CF Foundation and for everyone who has donated to help the Foundation realize its mission of controlling and CURING CF. Please believe me when I say that every dollar counts!!! The Foundation has invested hundreds of millions of dollars to help develop CF drugs and therapies. 

Thank you for being on this path of hope with us as we await Crosby's cure.

Love,

Carmen

PS: We have several fundraisers coming up in the next couple of months and I will be sharing about them soon.


 
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