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FARAFARA Cure FA

FARA Ambassador Program

The FARA Ambassadors is 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.

FARA Ambassador Program Mission Statement:

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.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


 

3rd Annual Costume for a Cure

CostumeforaCure2017The 3rd annual Costume for a Cure was held on November 4, 2017. Costume for a Cure is an annual fundraiser, hosted by me, Chelsea Conley, in St. Clairsville, Ohio (near WV and PA). It consists of Halloween Costumes, a DJ, dancing, dinner, and Chinese Auctions. This year there was also face painting and Jingles, the balloon artist. We also had a 50/50 this year. The winner received $300 and donated $100 back.

ALL proceeds go to FARA for research for a cure/treatment for Friedreich's Ataxia (FA). This year's theme was Hocus Pocus, so there were witch decorations and witch themed desserts. The dinner menu consisted of chicken, ham, hot dogs, stromboli, cheesy potatoes, green beans, and calico beans.

Everything was delicious and the night was very enjoyable. There were five people with FA present; Beth Hanes, Lilly Lucas, Drake Hampp, Ashlea Smith and myself. Ashlea gave an excellent speech about FA on behalf of the FARA Ambassadors.

Costume for a Cure raised almost $8,000 this year!  Add a comment

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A Weekend to Remember

PhillyWeekend17 1

Sitting at my computer desk back home in Louisiana, I am daunted trying to fit the profoundness of October 14-16, 2017, in a simple blog post. Know that the warm, homelike sense of togetherness was there, in much greater amount than this writing implies.

When it comes down to it, togetherness was the most impacting part of this weekend. FA is such a rare, such an unknown disease, that people with FA mostly feel doubly burdened: not only do we have to battle a progressive, debilitating disorder, but we have to explain the symptoms aggravatingly often to those unfamiliar with it. (If we had a dollar for every time someone thought an FA patient was drunk, we’d never need another research fundraiser.) But being in Philadelphia this weekend, among crowds of people familiar with FA, finding people willing and eager to help in all circumstances (I especially appreciated those who offered to push me in my wheelchair down the thick carpeted hall.) - well, that was indescribably comforting. 

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The 8th Annual Race for Matt & Grace

RMG17 1On Saturday, September 23rd at Rhode Island College, my family was surrounded by the love and support of FAmily at the 8th Annual Race for Matt and Grace. There were about 300 participants, and about 100 more in attendance between vendors and volunteers. Our FA community is exceptional: we are truly in this journey together. We have a fierce determination to come together in love and support of each other, and to have a great time!

This was my second year coming to the race, and my husband Kevin and I decided to bring our two boys in Vermont with us this year (Elijah, 7; and Gabriel, 5), and make it a mini-vacation! The drive down was beautiful, to look out the car window we could see the colors of the leaves that were changing. Since we left on Friday, the boys were excited that they could miss school for this family trip. Along the way, we talked about the race, and why it is important to us, and our whole FAmily. They each talked about what it would be like if Mommy didn’t have to be in a wheelchair anymore. We imagined all the different things that I could do with them, and experience with them, and not just watch. We even talked about my being able to run with them someday! It was such a joy to share all our wishes and hopes! 

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FA Hangouts - November 2017

FAHangouts November17The FARA Ambassador Program presents an FA Hangout you don't want to miss. We know that having FA is a struggle. It can be a challenge to just keep up with daily life. Which makes accomplishing a goal you've set for yourself that much sweeter. So that's what we'll be talking about this month...the moment you're most proud of. Join us and share your thoughts + experiences and maybe get inspired to set some new goals of your own.

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 for hearing or speech difficulties.

When: Hangouts will be held: Tuesday, November 28; Wednesday, November 29; Thursday, November 30 (mark your calendars, FA Hangouts will be the last consecutive Tuesday, Wednesday, and Thursday of the month, except on holidays and the like) at 8-9:30 PM EST all three days.

How: Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangout capacity to 10 devices. 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. Lately all our hangouts have been filling up. If you signed up and can’t make it, please let us know so we can give the slot to someone else.

An email will go out (at the latest) 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 15 minutes early, but the topic conversations will begin at the top of the hour.

See you soon!

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Sam Bode

SamBode1Name: Sam Bode

Age: 31

Where do you call home? North Branford, CT

Education: I have a bachelor of science in communications with a specialization in video production.

What is your relationship status? I am a single transgender male. I live at home with my sister, Alex and mom. We have learned how to live together as three respectful adults. A lot of people seem to think there is something wrong with living at home with my family, but our house is always fun with people around at all times of the day.

What's a typical day for you? A typical day for me would be to get up early and get ready for work. I work in my old high school as an administrative assistant. I am responsible for directing people who visit the school, as well as some security (no I don’t carry a gun, which is not advised for someone with FA:). I also mentor some of the students and help out teachers. After work every day I have someone work out with me.

How long have you known you are living with FA? I was diagnosed when I was 8 years old, on April 13, 1995.

Are there any others with FA in your family? Yes, my younger sister Alex has FA. 

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