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FARAFARA Cure FA

World of Beer Fundraiser

Held at World of Beer in Arlington, VA on Sunday, July 14, 2013 was the kick off party to what will be a continuous benefit for FARA.**

I rode with Tom and Cindy Trovinger to World of Beer, where we met Ron and Raychel Barteck, John Cernosek and his sister, Laura, and lots of other FAmily and friends. New to our FAmily is Megan. This was her very first time meeting anyone with FA and we can all remember how scary that is, especially because everyone else was more progressed than she was! Kudos to her for taking the plunge! She was very nice and friendly! Smart too! And she definitely has the good looking genes that come with FA. ;-) Total package and a great new addition to our FAmily!

World of Beer has way too many beers to choose from, the menu was a book! I would have taken quite a while to decide which to try, but they had very conveniently chosen PALM beer as the beer to drink. In addition to the kickoff party, 10% of Palm beer sales will go to FARA! I liked the beer very much. Not strong, but not too lite either! A good medium! There was also some really great live music and a silent auction. I was the only one to bid on the women's PALM tank so I am happy to say that I won!

The event was also extra special for me, because my friends Ian and Evan, whom I haven't seen in years, came out to support the cause. I first met them many years ago at MDA camp. Ian suffers from SMA, but is still an accomplished musician and actor. He also has a law degree if those ever fall through! I haven't seen either of them since they came to visit in Orlando when I was living there 5 years ago! It was really great to see them.

I think I got a little too excited about the food -- I also tend to talk a lot with my hands (I get that from the Italian in my blood!), and ended up smacking my beer across the table and into Tom's lap! Whoops! Luckily, it was just Tom ;-) He is always so nice to everyone! On the inside he might have been a little bit pissed, but he bit his toungue and laughed it off!

We are all very appreciative of World of Beer in Arlington and PALM beer for hosting this event to benefit FARA and to help us find a treatment for FA! We are also very thankful for having such an awesome FAmily! Always a great time!

**Please visit World of Beer in Arlington, VA and purchase PALM beer & 10% will be donated to FARA. Thanks so much to our friends at WOB, Arlington! (This offer is only valid at the WOB, Arlington location.)

Lauren

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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