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FARAFARA Cure FA

A Whole Lotta Love for FA Hangouts

We think the FA Google Hangouts that the ambassador program sponsors/puts on are awesome. This project was the original idea of former member of the ambassador program, John Cernosek. Thank you John for beginning such a meaningful project. So, in a very unscientific way we asked people to write about the hangouts in general or the last hangout on careers. Below is the product of that and the consensus is that the hangouts are as awesome as we think they are. Natalie and Rachel are participants in the hangouts while Jacob and Robbi are members of the ambassador program and the team that puts on the hangouts specifically. We all have FA.
 
I saw the Careers Google Hangout advertised in a Facebook group, and I was interested in hearing about the careers of other people with FA - I was looking for inspiration! I decided to take part because of this nosiness, and to talk to people with some of the same issues as me.
 
I didn’t really know what to expect, but I was worried the experience could be all doom and gloom, and I’d end up wishing I’d never bothered. I assumed that almost everyone would already know each other and I wasn’t sure how much I’d be able to contribute to careers talk.
 
I’m really glad I took part in the hangout, and I plan to join the next one. Everyone was really nice and welcoming, and I never felt out of place. It was pointed out that my trying to live in the past is pointless, and I should focus on what I can do now. I think I needed to hear this from someone in the same boat. The people I met were proof that having FA doesn’t mean I can’t have a career – it’s me, and not FA, that’s stopping me. Now I just have to sort that bit out.
 
 
 
Why are FA Hangouts run by the Ambassador Program so meaningful and such a success?  The answers to that question flow as easily and freely as the conversation in our hangouts.  Our team provides a friendly, accepting, positive environment in which people who may have limited opportunities to meet can connect, relate and socialize face to face!  As long as someone with FA has access to a computer with a webcam and audio, he or she can literally hangout with us!  Remember, registration is required!  How accepting and welcoming is that?    Our topic for every month enables each session to be a vehicle of idea-exchange in our supportive venue.  In June, we discussed careers, which was a great and very helpful backdrop for conversation.  It can often be quite inspirational to hear from others with FA who have full-time or part-time jobs.  
 
For me, personally, the FA Hangouts the last Wednesday and Thursday of each month provide me with motivation to meet new people with FA.  For many years, the only other person I knew with FA was my middle sister, Becca.  She has been in heart failure for several years now, so our sessions, as well as working on the hangout team, have extra value for my coping.  To some extent, that’s true for all of us, right?    
 
 
 
 
 
When I first saw the post for FA hangouts a few months ago I battled myself in whether I wanted to put myself out there and meet others like me. I thought I was alone this whole time and no one could relate. Now I couldn't be happier that I decided to try it the first time. There's been a huge burden lifted from my shoulders from hearing stories from other people and the daily life they're able to live. At first I was so shy. I had no clue what I had just got myself into. I sat and listened to each one tell the stories they had to tell, and for once I felt normal. Now I look forward to future hangouts. I've learned that I'm not going through this alone and others with FA will just jump into your life to be your back brace without hesitation. There are things I can do and things I can't but I shouldn't let FA be what stops me from what I want to do. 
 
 
 
When the AP (Ambassador Program) announced the first hangout seven months ago, I thought this would be right up my alley. Since then I have met some amazing people from around the globe. This program has exceeded my expectations. It has let me see first-hand how small this world seems through the use of this software. The drive of the global FA community is a very humbling thing to witness. 
 
Join our conversation the last Wednesday and Thursday of every month. Even if the topic isn’t right up your alley, your contributions to our conversation will be very valuable so don’t hesitate to join. You can sign up for the future hangouts by emailing Mary at mary.bircher@gmail.com or if you want more information email Jean at jeantw62@gmail.com.
 
 
 

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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