20 Years & Tasty Beers

It’s that time of year and it’s time to think beer. Since it's inception in 2000 I've been the chair of the Festiv-ale beer tasting event to benefit the Cystic Fibrosis Foundation. Each year is great but this year’s event is really special. This year I celebrate a milestone.

 

‎20 years ago this month I almost lost my life to CF. One morning I woke up and felt like there was an elephant on my chest. I had a serious pneumonia and was in right heart failure. At one point I was too weak to even walk from the car to the house and needed to be on oxygen 24/7. My only option was being listed for a double lung transplant. However, at that time a new drug called Pulmozyme was in clinical trials funded by the CF Foundation. It gave me hope. I exercised to gain strength for transplant but also in hoping I wouldn’t need one. I was lucky. It worked. Just two years later I started Pulmozyme, was off oxygen, and was taken off the transplant list.

 

Now twenty years later it feels like the movie Groundhog Day. Once again I’m about to be evaluated for transplant. Once again I’m using oxygen (at night and with exercise). Yet once again there is hope. The new hope is a new drug VX-809 from Vertex Pharmaceuticals. They are enrolling for stage 3 of a clinical trial funded by the CF Foundation. Vertex recently released a drug called Kalydeco. It is saving lives for people with the G551D genetic mutation. However, the vast majority of those with CF (including me) have the Delta508 mutation. The hope is real and it’s only a few years away.

 

Festiv-ale is about tasting beer, but it is also about raising a glass to help raise money to support this research. Join us on September 22^nd. We will be celebrating beer and we will also be celebrating life. Hopefully for another 20 years.

 

Tickets are on sale now for $45 and can be purchased by calling the office at 317-202-9210 or at http://indiana.cff.org/festivale. You can also make a donation at this link for those of you that cannot attend.

 

Thanks and Cheers,

Steph

Festiv-ale Chairperson

CF Adult

 

RSVP on Facebook: http://www.facebook.com/events/455436567823344/

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