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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!


 

Danny Rieffenberger

Danny mtcName: Danny Rieffenberger


Age: 33


Where do you call home? Watertown, South Dakota


Education: I dropped out of high school when I was in the eleventh grade due to my diagnosis.


What is your relationship status? Do you have children? My wife Alex and I have been married for just about three years. I have one daughter who is 12 years old, her name is Hannah.


What's a typical day for you? I currently stay at home full time. My daily routine consists of waking up around 10:00 AM, I try to shower and get ready for the day by 12:00 PM. I spend time playing with my dogs Stella and Franky outside. We wait till my wife gets home from work around 5:00.


How long have you known you are living with FA? I was diagnosed with FA when I was 15 years old. However, my older sister Mandie was diagnosed several years prior. This gave me a strong intuition of my diagnosis around the age of 12.

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Brittany Sommerfield - My Solo Wheelchair Journey

Brittany Journey collageHello, my name is Brittany Sommerfield. I am 23 and I volunteer as an ambassador for FARA. My main career is as a Travel Agent (Pro) with an Ontario company, ‘Travel Agents in Action’. Last fall, I took part in the 10th annual FARA symposium. What made this adventure a little different is it’s a solo journey- cross border- to an unfamiliar city- in a wheelchair! Departing October 13th and returning October 18th, journeying from Winnipeg, Manitoba (Canada) to Philadelphia, Pennsylvania (USA) with a one-day extension to Toronto, Ontario (Canada). Even with 3 years in the travel industry, plus close to 40 trans-border vacations, I have taken, it wasn’t easy. An amazing, wonderful, life-changing adventure I am so happy I took, as well as, immensely proud of myself for doing! Here is my travel journal where you can follow the triumphs and challenges of my trip.

Day 1 - Friday, October 13th
Today I said goodbye to Winnipeg, Manitoba, Canada to begin my 6-day voyage. Up at 5 am and I got to the Winnipeg International Airport just after 6 am. My dad quickly said his goodbyes and I was off on my own. I’m a frequent traveler so I can say navigating the airport isn't so bad for me and it helps that the Winnipeg airport is tiny. But it never hurts to ask, if you're not 100% certain, just ask a staff member to help guide you. It’s no shame, airports are very complex. I said I was okay alone and I am. I can manage but my stubborn little ways get me into trouble. So when people offer to help, I would say no without thinking, but after a minute I would usually be convinced to say yes. And thank goodness, there are so many good people still in this world to offer such assistance. I don't think I would have gotten through airport security on my own without these good Samaritans. I need to note to myself, just say yes when the staff offers to help…

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Anthony Monaco

MTC Anthony 6Name: Anthony Monaco

Age: 28

Where do you call home? Boston, MA

Education (degrees): Some College

What is your relationship/living status? I live alone in a wheelchair accessible apartment. I have a girlfriend. It’s a new relationship, and it’s going wonderfully.

What is a typical day for you?  I guess it depends on the day really. On Mondays, I run all my errands (food shopping, etc). The rest of the week, I relax at home, stretch, light yoga. I recently got into cooking so I’m honing my skills. Most of my friends are scattered across the country so we’ll play the PlayStation together to hang out. I also go to a lot of shows in the Boston area.

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6th Annual Mother’s Day Race for Christina

Mothers Day Race Collage“There is no treatment or cure. However, there is a strong sense of courage and hope in the FA community, due to ongoing research and clinical trials because of grassroots events like this,” said race organizer Christina Logan.

The 6th Annual Mother’s Day 5K Race for Christina was an absolutely amazing event, held at the beautiful Tyler State Park in Richboro, PA on Sunday, May 13th (Mother’s Day). When registration began at 8:30 am, the morning started out with a chill in the air from a cold and rainy night before. But as friends and FAmily gathered, you could feel the hope and determination in the air. We weren’t going to let a little rain stand in our way to cure FA. This belief that brought us all together on that morning, helped to warm us for the race.

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Teen Hangouts - May 2018

FA Teen hangout May 2018Join the FARA Ambassadors for a hangout for teenagers with ataxia. FA Teen Hangouts are hour-long web-based hangouts. *We are now hosting them on WebEx. If you had a hard time joining our Google Hangout, you aren’t alone. We hope you’ll try again on WebEx.

If you don't have ataxia, you are not allowed to participate in the hangout. There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.

This will be our second month of having Teen Hangouts lead by the teens themselves. Madelyn Frederick (she also made our great graphic this month) will be our leader.

This month's theme: What Motivates and Inspires You?

When: Thursday, May 31st 8-9PM ET (The hangout opens 30 minutes early to try to work out technical issues, please remember we are volunteers not IT professionals, come early if
you’ve never attended a hangout before.)

Who: Teens ages 13 to 19 (Please note: all the teens will be together this month, but we plan to host separate hangouts for young and older teens in the future.)

Where: On WebEx so if you have access to the Internet and speakers and a camera on your device, you can come!

How: If you are under 18, you need to get your parents or guardian to sign a consent form (click HERE). This should be emailed to jeantw62@gmail.com. Parents/guardians can also ask questions at this email address. Then, email farateenhangouts@gmail.com and request to join. A minimum of a half hour before the hangout opens you will be sent a link to join the hangout on WebEx.

Please send us an email to either address if you have questions!

See you soon!

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