• My Family

    Blessed by the Lord for the Joy of family!!

  • 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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Cystic Fibrosis Fundraising

Some people ask why I work so hard to raise funds for a foundation?  I have heard things like, “I wish the money was going directly to your family.”  While I understand the heart issue in statements like this, and even more so appreciate the desire to bless our family, there  is a big reason.  There is not enough money that could possibly be raised by our family and friends alone that would enable the amount of research needed to solve the problem of CF!  This needs to be a worldwide, collaborative effort.  The answer to this disease is out there!  The researchers are getting so close, that some days its hard not to get overjoyed in the future while still battling the daily grind of what CF is today.

So, while I know it is sometimes hard to give to a “Foundation”, please know that this is really giving not only to Rachel, but tens of thousands just like her!  The Cystic Fibrosis Foundation (CFF) receives no federal funding, since it is considered a “rare disease” or orphan disease.  It only affects 30,000 people nation wide, and unfortunately this means there is not enough INTEREST in giving federal money towards it. So the CFF raises its own money for the research. The CFF is one of the most efficient agencies of it’s sort out there.  It uses 90 cents out of every dollar to research a cure for our Rachel.  I love that they use the money for what will actually make a difference in others lives.   As much as I wish that others were well aware of what CF is, I know that the CFF focuses the money raised for research and not awareness campaigns.  That is left to the parents and other people in an effort to save money.  So…I will keep doing everything that I can to promote the awareness and raise funds for this vital research.  Please know that your help greatly affects our family.  Thank you!!

3 Responses

  1. Tiff…Can you send us a link so we can give? Thanks!

      • So sorry. We decided to discontinue the website this year. We used it a lot for our fundraising dinner event. It helped people, companies and business that were donating understand the fight we are up against! We may update/reestablish it again in the future? If you want any of the information on it, let me know. =) I have it all saved (her story, the videos from the last 4 years ect.).

        Thanks again for your love and care for our little girl! It really is a precious blessing to us. We think about you often, and pray that you are well.

        In His Grace and Strength,
        Tiffany

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