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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!


 

Adam Griffies

AdamGriffies1Name: Adam Griffies

Age: 23

Where do you call home?  Born and bred in Liverpool, UK.

Education (degree(s)); What is a current goal you have with your education? Until my FA diagnosis I achieved good grades in school, then when my A Levels started my focus evaporated as my thoughts were elsewhere. Since then, I have done a few courses, in particular a Social Sciences Access To Higher Education course which I passed with a Distinction in May 2016. I then went on to study Sociology and Criminology (BA) at Liverpool Hope University, but after finishing my first year there I decided my fatigue was making it too difficult for me. I am currently looking at Open University courses which should suit me better as they are done from home.

What is your relationship status? Do you have children? Where do you live? I am currently single and don’t have kids but I’d love this to change in the future. I live in a really nice flat alone, which I am extremely lucky to have. I also have family and friends nearby.

What's a typical day for you? I like to get up early, have oats for breakfast and normally listen to a podcast to set me up for the day. Then I get to the gym for an hour so. After that I’ll have lunch, either with a friend or my mum and get a few things done like odd jobs, shopping etc. In the evenings I like to relax by watching TV or reading a good book, and reflect on my day before bed.

How long have you known you are living with FA? (When and how were you diagnosed?) I was told I have FA in February 2010. I had a number of tests and then it was confirmed by bloods. My parents were actually told a couple of months before to help prepare for when I found out, which I understand. As strange as it sounds, my diagnosis was a slight relief (as well as being shocking and upsetting) because I finally had an explanation for why I’d been struggling with my main love – playing sports – for a few years. 

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Allie Kittel

AllieKittel1Name: Allie Kittel

Age: 25

Where do you call home? Northern New Mexico

Education: I am currently in college studying drawing and painting.

Where do you live? I live alone in an apartment.

How long have you known you are living with FA? I was diagnosed when I was 5, but my parents told me I had FA when I was 8.

Are there any others with FA in your family? My older brother, Aaron, also had FA. He passed away in 2010.

Describe your transition from walking to walker/wheelchair. I had been walking without mobility aides until I was in high school. I started using a walker to help with balance and using a scooter to get in between classes faster with less fatigue. I used a wheelchair for shopping and longer activities outside of home. I got my first power wheelchair at 18. I started by using it most of the time outside my home, still walking some with my walker. I believe my transition to power wheelchair has kept me independent for a long time, by conserving my energy and allowing me to ride around for long distances independently.

What do you like to do to stay active and what type of exercises work for you to stay strong? I go to physical therapy 1-2x/week. There, I stand in the parallel bars, ride a stationary recumbent bike, and do other strengthening exercises. Physical therapy has been the best thing I do for my physical well-being, as well as my mental health. At home, I stand for longer periods in my standing frame and I have some exercises I can do from my wheelchair. 

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FA Hangouts - January 2018

FA Hangouts Jan18The FARA Ambassador Program presents an FA Hangout talking about: How Do You Express Yourself? Do you write poetry? Paint? Wear funky clothes? Cook? Etc. Tell us what you do and if and how it helps you deal with life with FA.

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 January 23rd, Wednesday January 24th, and Thursday January 25th (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 each of the 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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Teen Hangouts - January 2018

Jan18teenhanngoutsThe FARA Ambassador Program is excited to announce the third Google hangout for teenagers with FA. it is an hour-long web-based hang out. If you don't have ataxia, you are not allowed to participate in the hang out. There will also be two or three adult FARA Ambassadors present. The adults will be there just to help keep the conversation safe and going. We have themes for discussion, but they are just to give us a framework we don’t have to talk about the theme. Hopefully it is a way for you to connect with other people experiencing similar if not the same things as you.

The theme this month will be: new year, new you. What are your plans for 2018? How has having FA affect your plans or does it?

When: Thursday, January 25th @8-9PM ET  (The hangout opens 15 minutes early to try to work out technical issues, please remember we are volunteers not IT professionals.)

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 Google hangouts so if you have access to the Internet and speakers and a camera on your device, you can come!

How: 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. Additionally, they can get a consent form here if they need to. 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.

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

See you soon!

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Megan McIntyre

MeganMcIntyre1Name: Megan McIntyre

Age: 35

Where do you call home? I live in Southern Ontario, Canada near Hamilton.

Education: I have a Bachelor of Arts Degree in Psychology, from Brock University.

How will FA add to your future? A friend told me to write what I know, so I began to compose my memoir. I’m now in the process of writing a children’s book about my life and experiences.

What is your relationship status? I am currently single and do not have children. I live with my parents.

What's a typical day for you? I sleep until late morning, eat brunch, have a shower, do some writing, shopping or get together with a friend, have dinner and watch some of my favourite television shows.

How long have you known you are living with FA? I have known that I have FA since I was fourteen years old. A few months before I was diagnosed, the blood test for FA became available to doctors. I had a slightly awkward gait, scoliosis and swayed if I shut my eyes, so my neurologist did a blood test to check for FA.

Are there any others with FA in your family? My two older brothers do not have FA. There isn’t any sign of the neurological symptoms associated with FA in my extended family.

Describe your transition from walking to walker/wheelchair. In my early twenties, I reluctantly transitioned to using a wheelchair. I soon realized that a wheelchair was my key to the outside world. In my late twenties, my parents and I moved from a four level side-split, into a one level unit in a high-rise condominium. 

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