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FARAFARA Cure FA

The FARA Ambassador Program presents FA Hangouts

As we know, FA presents many unique challenges to every day life. Solutions are rarely obvious. In some cases we have found solutions. In others we need guidance.

Using the Google Hangouts application, we will be hosting opportunities for open conversations about FA-related topics with people in the community. The first FA Hangout will be Monday, December 22nd from 7 to 8 pm ET. We will have one Hangout with a different topic each month. The program allows for 10 people to be in a video chat room at a time. We will have multiple Hangouts if more than 10 people sign up, so there is no need to worry about not getting a spot.

To run Google Hangouts, you need a Google+ account, a stable internet connection, a webcam, a microphone and a quiet environment. I have a decent but not yet fluent understanding of the program. There are tutorials on YouTube but I found them confusing. If you have questions on how to set up and run Hangouts, email me at john.cernosek@gmail.com.

The topic for the first Hangout will be What does FA mean to you? and will be available to all individuals with FA and an interpreter if needed. Future Hangouts will be held for parents and such members of the community. Examples of future topics include driving, transitioning to a wheelchair, communicating needs to family and so forth. No topic is off limits. Topics will be driven by demand. Some will be 18 and older.

The idea here is to have conversations that can only be had among people in the same little boat, in a controlled and semi-private environment. We will be able to share our brilliant ideas, listen to others share theirs, ask questions and tell stories that few can relate to, and do it while looking at each other. I will be there as well as Jean Walsh to facilitate the conversation.

It is asked that you exercise discretion and civility at the Hangouts. While I would like to ensure total privacy at a Hangout, such a thing does not exist on the internet. I encourage you to attend and open up as you see appropriate.

To sign up, please email john.cernosek@gmail.com at least three days in advance.

John

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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