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  • Rachel’s Daily Cystic Fibrosis Medications

    Albuterol (2-4 x)
    Hypertonic (2x)
    Pulmozyme (1x)
    Glutathione Inhaled (2x)
    Advair (2x)
    Prevacid (2X)
    Ursodial (2x)
    Glutathione oral (3x)
    L-Arginine (1x)
    Acidophilus (3x)
    Vitamin (2x)
    Periactin (2x)
    vitamin d3 (1x)
    Cal/Magnesium blend (1x)
    ADEK (1x M,W,F)
    Creon 12 (6 with meals and snacks)
    Vest (2-3x) 30 minutes
    Percussion (30 minutes)
    alpha lipoid acid (1x)
    singulair (1x)
    fish oil (1x)
    nasonex (1x)
    zyrtec (1x)
    azithromyicin (M, W, F)

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Time stuck to a couple of machines proves a perfect time to reflect, and brainstorm on HOW to raise money that will change the hundreds and hundreds of hours that she is chained to this machine every years.

We have designed, made, sold and worn Rachel’s Raise of Hope shirts for nearly the last 10 years.  They are a lot of work, but SUCH aN incredible course of strength and joy to our whole family. MORE THAN WE COULD EVER EXPRESS.  Especially to my girl.  She absolutely LOVES seeing her shirts being worn through out the years.  She never fails to notice.  I have asked her several times what she thinks of these shirts and she smiles her brilliant and huge smile and I know…these are special memories and gifts to her.

This year has been busy.  I MEAN REALLY BUSY!!  Between school, and sports and just kids that are older and into more stuff.  The cf walk and shirts have been pushed to the back burner just trying to stay up to date with the daily.  Anyway a couple of weeks ago Rachel started asking what shirts we were going to make this year.  I told her, “Ummm…haven’t even thought about it.”  Then asked if she even wanted to do shirts?  SHE LOOKED AT ME LIKE I WAS CRAZY! =) Then she asked what the best site was for coming up with the designs?  I was busy and didn’t respond.  So she took it upon herself to go get my bright yellow “CF folder” where I keep my notes and ideas from year to year in, and proceeded to begin working on a shirt design herself.

So began the process of getting a design.  An idea.  A direction for the shirts this year. WELL..I think she rocked it out of the park.  Last year she brainstormed with us and actually had the final say on the shirts, and the design.  This year, she developed about 90% of it all.  We helped tweaking a few ideas, but she really did a great job of working through fonts, balance and WHAT the shirt said.  She was set on the 65 this year, and loved strength as she needs that daily to fight this disease.  Then with a brainstorming session between dad, mom and her we came up with changing the E to a 3 to indicate 365.  When we saw that we ALL SMILED!!  God is good.  She wanted to put a verse on it still, and not sure where or how (we have a designer that may help us with the specifics of that and artistic elements as well) but Rachel was pretty proud of the fact that this was her idea and that so many liked it.  There is such joy in the little things like that sometimes. GRATEFUL!!!

Now to sell some shirts and raise some money for a cure for CF!!

If you would like a shirt, please fill out the google form.  And we will begin working on getting a shirt to you!


Is such a reminder of the friends, family and love that we receive throughout every day!! We have the best people in our lives and we are so incredibly thankful for each and every one of you that work to make our lives smoother DESPITE this awful disease of Cystic Fibrosis!!  THANK YOU from the bottom of our hearts!


Google form to order a shirt.  They are suggested donation of $15 each https://goo.gl/forms/SFuW4EdlIqXD7SH63


***(We will have group/family discounts of 6 or more available again this year as one of our greatest dual goals is not only to raise money, but to get shirts in and on the backs of as many people as we can.  AWARENESS IS POWER!!!  WE CAN DEFEAT CYSTIC FIBROSIS!)! https://goo.gl/forms/SFuW4EdlIqXD7SH63


Also, still looking for sponsors for our shirts.  If you are interested or know someone that might be interested in sponsoring our shirts this year, please reach out to me.  The sponsorships on our shirts are one of the most effective ways of raising money for a cure for CF!  Thank you.

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