Are You Aware?

5 May

Do you remember the first time you learned about Cystic Fibrosis?  It has been my experience that unless you work in healthcare or have a personal connection to the disease (most likely through a friend, family member, or acquaintance), the words “Cystic Fibrosis” have little or no meaning at all.  This needs to change!  The month of May is Cystic Fibrosis Awareness Month.  Consider these statistics from the CF Foundation website:

  • 30,000 children and adults have CF in the United States.
  • More than 10 million Americans (1 in 31) are symptomless carriers of the defective CF gene but do not have the disease (you could be one of them).
  • About 1,000 new cases of Cystic Fibrosis are diagnosed each year.
  • The predicted median age of survival for a person with CF is in the late 30s.
  • There is no cure for this disease.

Since 1955, the Cystic Fibrosis Foundation (CFF) has been the driving force behind the pursuit of a cure.  This foundation has been crucial in advancing an understanding of what was once a little known disease, creating treatments and standards of care, as well as fighting for a cure.  The CFF invests aggressively in drug development research.  We personally are looking forward to a new drug that just received FDA approval and will soon be available for patient use.  This drug will significantly reduce the time it takes for Jody to do his treatments each day.

Here is what you can do to increase awareness:

  • Talk about CF in your social networks (i.e., Facebook, Twitter, Google+, etc.).
  • “Like” the Cystic Fibrosis Foundation on Facebook for the latest news on what’s happening in the CF community.
  • Take some time this month to educate someone about Cystic Fibrosis (and if it’s easier for you, share this post with them).
  • Participate in a “Great Strides” fundraiser walk (thank you to the friends and family we know who are already doing this).
  • Donate here to the CFF in honor of Jody or someone else you know who is fighting against CF.

Finally, I’d like to share this short award-winning video, “Adding Tomorrows.”  This video gives you a small glimpse into the lives of those with CF and the importance of spreading the word so that one day we can say Cystic Fibrosis is a disease of the past!

One day CF will stand for Cure Found!

2 Responses to “Are You Aware?”

  1. Emily May 5, 2013 at 9:09 pm #

    Thanks for sharing Tiff. The resources are great too. I have been enjoying all of your posts. I hope you, Jody, and the girls are doing well!

  2. 1dangerdan May 5, 2013 at 11:48 pm #

    Reblogged this on DangerDan and commented:
    When was the first time you learned about Cystic Fibrosis? Please read this article there is quite an amazing video attached in it!

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