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FARAFARA Cure FA

FA Hangouts 2.0

Greetings,

We had three successful FA Hangouts last month discussing What does FA mean to you?. We laughed, we connected, we hung out. Thank you to all who participated in the first steps of the program.

This month's topic will be Everyday At-home Adaptations and Modifications and is open to all persons with FA and a translator if needed. Hangouts will be held Monday January 26 and Tuesday January 27 at 7 and 9 PM EST both days. More times will be added if needed. Email me at john.cernosek@gmail.com to sign up. Please indicate if there are any times that do not work for you. We will try to accommodate everyone.

An email will go out 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. Topic conversations will begin at the top of the hour.

About 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. We will have Hangouts with a different topic each month. The app 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 (plus.google.com), a stable internet connection, a webcam, a microphone and a quiet environment. I have a decent but not yet fluent understanding of the program. It is user friendly. If you have questions on how to set up and run Hangouts, email me at john.cernosek@gmail.com.

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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