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FA Hangouts - May 2016

The FARA Ambassador Program presents an FA Hangout talking about what you do to stay positive. We’ll share what works for us and learn what works for others. Maybe someone else can help you find ways to make a bad day better or maybe you’ll make someone else’s bad day better. 

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every hangout is open to anyone with FA and a translator if needed. 

Hangouts will be held Wednesday May 25th and Thursday May 26th (mark your calendars, FA Hangouts will be the last Wednesday and Thursday of the month, except on holidays and the like) at (new time) 8-9:30 PM EST both days (just one hangout per night, but it is longer). More times will be added if needed. Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangouts to 15 people. FA Hangouts do fill up. It is first come, first served. So the earlier you sign up, the more likely you are to get the date and time you want. Please indicate if there are any times that do not work for you and which times you’d prefer. We will try to accommodate everyone.

FA Hangouts - April 2016

The FARA Ambassador Program presents an FA Hangout talking about clinical trials. This month we are very excited to welcome Felicia DeRosa, FARA’s Fundraising and Communications Program Director, to our April 26th hangouts and Jen Farmer, FARA’s Executive Director, to our April 28th hangouts. We’ll learn how to participate in trials and what it means to finding meaningful treatments. It can’t be done without us! We’ll learn from each other about what it is like to participate in clinical trials. Do folks have strategies for making participating easier? Please come whether you have or have not participated! There will be no pressure to participate in future trials, just sharing about being in trials.

This is what one of the FA Hangout participants says about Hangouts: “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. “ 

FA Hangouts - March 2016

The FARA Ambassador Program presents an FA Hangout talking about goals. We’ll learn about each other’s goals. We’ll talk about: How important it is to have goals. Can we support each other? How/are your goals different because of FA?

This is what one of the FA Hangout participants says about Hangouts: 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.

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome! 

FA Hangouts - February 2016

The FARA Ambassador Program presents an FA Hangout talking about the National Organization of Rare Disorder’s motto: “Alone we are rare together we are strong.” We’ll talk about what it is like to have a rare disease, Friedreich’s Ataxia. What do we have in common with others with rare diseases (like taking a long time to be diagnosed)? What’s different? What does Rare Disease Day mean to you?

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every hangout is open to anyone with FA and a translator if needed.

Hangouts will be held Wednesday, February 24 and Thursday, February 25 (mark your calendars, FA Hangouts will be the last Wednesday and Thursday of the month, except on holidays and the like) at 7 & 9 PM EST both days. More times will be added if needed. Email fahangouts@gmail.com to sign up or ask questions. 

FA Hangouts - January 2016

The FARA Ambassador Program presents an FA Hangout talking about everyone’s favorite New Year’s resolution: fitness. Tell us how you stay fit with FA, learn how others stay fit! This is sure to be a great way to learn from one another.

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme.

Every hangout is open to anyone with FA and a translator if needed.

Hangouts will be held Wednesday January 27 and Thursday January 28 (mark your calendars, FA Hangouts will be the last Wednesday and Thursday of the month, except on holidays and the like) at 7 & 9 PM EST both days. More times will be added if needed. Email fahangouts@gmail.com to sign up or ask questions. Please indicate if there are any times that do not work for you and which times you’d prefer. We will try to accommodate everyone. 

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