21 March 2012


Since there is no government or pharmaceutical funding for Cystic Fibrosis, families like ours depend on the generosity of others.  This is why fundraising has been one of the biggest roles of the Cystic Fibrosis Foundation and those families who belong to it.  The thought process has been: You can't find a cure without research.  And you can't research without money.

But as more and more drugs are showing promise for those with CF, it is becoming increasingly obvious that the job of the Cystic Fibrosis Foundation is not only to raise money for new medications but to ensure those medications can get quick and efficient FDA approval once they have been shown to be effective.  This is why a new important role of the Cystic Fibrosis Foundation as developed most recently: Advocacy.

I didn't really know what "advocacy" was until I attended the Volunteer Leadership Conference last month.  But once I understood, I realized this is equally as important for Bennett as fundraising for a cure.

For example, as important as it was that scientists were able to discover the drug Kalydeco, it was equally important that the FDA's approval of Kalydeco was fast (fortunately, it took less than 3 months, usually unheard of).  With a disease like Cystic Fibrosis, time is of the essence.  Advocacy prevents the roadblocks that might prevent a drug from being available soon enough.

The way the Cystic Fibrosis Foundation has begun to address the importance of working with the government to prevent roadblocks in the process of getting medications to people more quickly is by designing a "State Advocate" and "District Advocate" program where by volunteers take on the responsibility to contacting their local Representatives and Senators to let those who represent us in government know the needs of those with CF.

After careful thought, I have decided to take on the role of the Cystic Fibrosis Foundation's State Advocate Chair of Northeast Texas (the Dallas/Fort Worth area).  My job will be to stay on top of the legislative issues important to those with Cystic Fibrosis and to stay in contact with the government officials in my area.

So, I am excited to help out in this way.  It feels good to be able to help find a cure for my son that doesn't necessarily involve only trying to raise money.  Plus, I get to put my journalism skills to good use, which I love.  :)

There is, in fact, a really important bill coming down the pipe in the next two weeks.  But that seems like it should be a blog post all of it's own...


  1. Congrats! I am so glad you have taken on this role and you will do a fantastic job!

  2. That's cool about your new role! Very exciting!


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