Monday, October 30, 2006

Behind the Scenes at the CFF


Gratitude is not only the greatest of virtues, but the parent of all others.



--Marcus Tullius Cicero







This morning I had the opportunity to meet with some of the staff and volunteers at the local chapter of the Cystic Fibrosis Foundation. The first word that comes to mind about the experience is "wow." The amount of energy and effort that goes on behind the scenes every day is astounding. The public events, the fund raisers, newsletters, the website--anything you may have seen from the CFF--is only a hair's breadth of what is really going on.

In the past I didn't know much about the CFF other than what I saw on their website. I figured that since I have cepacia, there was really nothing I could do to be involved. Back in August I started my first letter writing campaign to raise funds for the annual GREAT STRIDES Walk, which is the CFF's largest event. Today I learned so much, not just about the fund raising processes, but about where those funds go, which biotech companies are involved in finding a cure, etc.

For awhile I had been feeling as though being an adult with CF meant that I was out of the spotlight when I comes to what the CFF is doing. Today I had that attitude turned upside down, and I couldn't be happier. Granted, there will always be things that are more geared towards the younger CF population as far as treatments go, but that's because a younger person's body is less likely to have been ravaged by frequent lung infections. That's the reality. However, today I read about things that will improve quality of life for CF patients--things that may serve to take at least a fraction of the drudgery of our treatments away leaving more time for enjoying life.

The Cystic Fibrosis Foundation is adding tomorrows every day for everyone with this disease. I am truly grateful for the work they are doing, and I look forward to giving back in at least some small way for what they have worked so hard to give me.

If you would like to contribute to the Cystic Fibrosis Foundation, please click on this link. There are more ways to give than just financial resources! You can volunteer your time at a local chapter office, or donate items to be auctioned off at an upcoming fund-raising event. The possibilities aren't as limited as you may think! You can even sponsor me as I participate as an "Angel Walker" in the GREAT STRIDES walk.

Comments:
Good timing since the national meeting is about to get started out in Denver. The Foundation is pretty amazing and there is a lot going on three fronts: finding the cure, finding better treatments, and improving the care that people with CF get. For the first time CF centers are going to be sharing their results with patients (I think by the end of the year) and there are more treatments in clinical trials then ever before.
 
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