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FARAFARA Cure FA

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. “ 

 

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.

PLEASE NOTE THIS MONTH'S DATE CHANGE --> Hangouts will be held Tuesday, April 26th and Thursday, April 28th at 7 & 9 PM EST both days. 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.

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. We will open the hangout room a half hour early, but the topic conversations will begin at the top of the hour.

See you soon!

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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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