Photo courtesy of the Cystic Fibrosis Foundation

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“Frank Deford, chairman emeritus of the National Board of Trustees of the CF Foundation, presented Emily Schaller with theAlex Award for her hope and determination in the fight against CF.”- Courtesy of the CF Foundation

Last week, along with my mama, I attended the CFF’s Volunteer Leadership Initiative in Arlington, VA. Much to my surprise, at the big dinner I was honored with The Alex Award by the one and only Mr. Frank Deford. You may know him as the author of Alex:Life of a Child. This was made into a made for TV movie in the 80’s. Everyone in my family knew about that I was getting this award and so did the whole Metro Detroit CF Chapter. They got me! Totally surprised and that just made the evening more special. Alex’s spirit continues to live on very strong in the CF community. This is the biggest honor I have ever received. Thank you CFF and The Deford Family.

Aside from the amazing honor, my mom and I were thrilled to be invited to this annual event where the key and focus is on the volunteers. There were roundtables with ideas on how to grow events & information about new events. A lot of information was shared and we all left very inspired and ready to Rock CF! It was also a great chance to meet other CF families and the great people who work for the CF Foundation.

Dr. Beall gave a rousing speech focusing on VX-770, VX-809, Cayston and the other promising drugs being developed right now. If that didn’t fire us all up, what could? Rich Mattingley kept the positive energy flowing with another speech. Finally Dr. Preston Campbell gave the State of Science address which showed us all exactly where we are right now and where we are heading. Believe me when I say that we are going to be celebrating some big milestones in the near future.

The whole weekend blew my mind. I couldn’t be more fired up and ready for the Just Let Me Breathe concert, City to City Ride 2010 and a few new events I have up my sleeve! An announcement with those should be coming soon!

I’ll say it again: Let’s rock cystic fibrosis so hard that CF will one day stand for Cure Found!

Rock CF,

Emily