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FARAFARA Cure FA

#AnnasArmy Purple Out

I have been seeing posts about #AnnasArmy for a few years now. They featured high school teens with lots of energy, smiling faces, purple everywhere and support for the FA community. So when I was invited to attend the annual #AnnasArmy FA awareness basketball game, I had to see what all the hype was about.

When we received a warm and energetic welcome at the Parkersburg South pep rally on Friday afternoon, the six hour drive from the greater Philadelphia area felt well worth it. We entered the gymnasium to find the entire basketball team sitting in the stands in purple long sleeve shirts. As more and more kids started to file in, all wearing purple, the excitement started to build.

Then Anna Gordon got to the microphone, and all of the energy of ~1500 students in the room focused on one person. Anna spoke eloquently about her diagnosis and how it was very emotional for her parents. She went on to describe the first time her Mom called FARA. Through the tears Melissa (Anna’s Mom) asked about FA research and next steps for her daughter, and the voice on the other end (FARA Program Director Felicia DeRosa) told her about the treatment pipeline and the Collaborative Clinical Research Network. Melissa finally felt a glimmer of hope hearing that there was a lot of momentum building for FA research and treatment development.

Anna then talked about the amazing support that she has felt from her classmates and teachers since that day. She finished by saying, “At South, we don’t fight battles alone” and the crowd erupted with cheers. Then she called me up to talk about how grateful the FA community is to have them on our team. I told my story and then told them...

The families who founded FARA funded the first FARA research grant in 1998 for $1,000. You gotta start somewhere. Fast forward to today. In 2014, FARA funded over $4 million in research. This incredible momentum and growth is due to the efforts of communities just like Parkersburg and strong individuals like Anna all across the country and all over the world.

I was treated to one of the warmest ovations I’ve ever experienced. At the basketball game that night it was another sea of purple. There was an #AnnasArmy booth in the entrance to the gym selling purple T-shirts. They sold out halfway through the JV game, before Varsity even started.

 

When the Varsity players came out in formation to some upbeat music, they were wearing their long sleeve purple #AnnasArmy shirts over the top of their basketball uniforms, and everyone was wearing matching purple Nike basketball shoes. Then, the opposing team came out and they too were wearing purple #AnnasArmy shirts. Both coaches were decked out in purple, the entire crowd was in purple, the cheer leaders had purple pompoms, and many of the students in the student section (The South Side Psychos) wore purple “eye black” under their eyes like war paint. It was a #PurpleOut. The #AnnasArmy movement at Parkersburg South runs, in part, off the energy and dedication of head basketball coach Mike Fallon. Coach Fallon seems to take every opportunity to teach his players and fan base that it is about much more than what happens on the court. It’s about how we react to life’s challenges, how we treat each other and fight battles together much like Anna’s personal message. So when he met Anna a few years ago, he became a force for FA awareness. He is always learning as much as he can about FA and encouraging all of the students to support the cause. He never goes without wearing an item of purple. If you see him in the grocery store, he is wearing purple in support of Anna Gordon and the fight for FA treatments and a cure. Before the game started, Anna was invited to address the crowd over the PA system. Her natural confidence commanded the whole gym, and once again the energy of an entire community was focused on one person. She acknowledged that FA was a rare disease but she said it was even more rare to have an opposing team with such class like the Wheeling Park basketball team. She then turned to Coach Fallon and acknowledging that he was one in a million rare with his support.

From the first possession, the intensity of play was through the roof. The scoring streaks went back and forth all night causing an emotional rollercoaster for everyone in attendance. Finally, with only seconds remaining and South up by three, Wheeling Park sunk a three pointer to tie the game and send it into overtime. 4 more minutes of extremely intense play and the game was tied again. With only seconds left, the point guard for Wheeling Park took one last shot. It went in as the buzzer sounded. Wheeling Park won by 2. It was an amazing game. The home crowd was rightfully crushed. However, the student body took it well and it is easy to see why. They are constantly reminded that it’s not all about winning, it’s about leaning on one another for the strength to get through the challenges and the unexpected. This community lives it every day with Anna, and I feel fortunate that I was able to be a part of it for a weekend. Follow @JoinAnnasArmy on Twitter!

Kyle

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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