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FARAFARA Cure FA

Cure Us Portland

Night I Will Never Forget. When my friend, Michelle Huebner Krause, approached me about a year ago with her and her fiancé’s idea for a fundraiser, I have to admit I was a bit skeptical. A dinner and live auction? How would we do it? How would we gain support from the community and people who had never heard of FA? Well, with determination and hard-work, I’ve learned great things are possible. I was so proud of Michelle, Jason, and the entire Cure Us committee when I walked in to Portland, Oregon’s Crystal Ballroom on that Saturday night, March 7, 2015. I cannot put into words the beauty I saw. From the flowers and table settings to the twinkling lights, the room could not have looked more amazing. The entertainment was beyond engaging, with charming emcees, live musical performances, and heartfelt committee speeches. 

Aside from the room, the people were beautiful too. Beautifully dressed, of course, but more importantly, beautiful on the inside. I met FA friends that will always be a part of my FAmily, and I was so proud of each and every one of them for coming out on such a special night. There were 16 FA patients that joined us and at least four more were represented by their families. Our local FAmily did not disappoint. It takes courage to be vulnerable and let people inside your life. If anything, this experience has taught me to be more open with my friends, family, and coworkers. Whereas I once cried at the mere mention of FA, I now am proud to talk about it, and educate others. I have Michelle and the rest of my FAmily to thank for that.The support here in Portland is unbelievable.

I am incredibly proud to have been a part of the Cure Us committee. The event raised $60,000 that will go to FARA and support research. Thank you to all 200 attendees who came to Cure Us and generously supported the event by making a donation, playing our Heads or Tails? game, buying silent raffle tickets, participating in the Wine Pull, and bidding on live auction items. Our FARA representative Jamie was awesome. The evening’s volunteers never stopped! I would like to personally thank my family, friends, and coworkers who came out on that wonderful Saturday night. I know one day there will be a cure, and I encourage everybody to do what you can to raise awareness and money so that cure will come soon.

 

Special Thanks

Our incredible emcees for the evening: Mike Chase & Amy Faust of The Mike & Amy Show on Portland's own 99.5 The Wolf.

Our very talented musical entertainment:
Headliner: Haley Johnsen 
Opening Acts: Kendall Lujan and Hailey Verhaalen

Gold Sponsor: MTI Worldwide Logistics

Silver Sponsors:
Architecture Ten Realty
Edison Pharmaceuticals 
Enterprise Holdings
Recumbent PDX
Tom & Dede Bradley
Joanne Hubbard
Michelle Huebner

And so many more!

 

More Event Photos

Please Visit www.CureUsPDX.org for Our Stories, News, and More!

And follow Cure Us on Facebook!

View the FAmily Slideshow

 

 

 

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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