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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!


 

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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FA Hangouts - December 2017

FAHangouts December 2017The FARA Ambassador Program presents an FA Hangout talking about our most memorable moments of 2017. Join us as we get ready to ring in the New Year!

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: Wednesday, December 27 and Thursday, December 28 (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 both 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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Jude Lally

JudeLally1Name: Jude Lally

Age: 35

Where do you call home? Lexington, KY

Education (degree(s)): Bachelor Business Administration from University of Kentucky

What is your relationship status? Do you have children? I am single, and live alone. I do have a fur baby/guard dog named Jermaine.

What's a typical day for you? A typical day for me begins and ends with caregivers coming to my house. The A.M. assistant helps me get out of bed, and ready for the day. This person performs general dog maintenance, meal prep, house chores, and some exercise. In between caregivers, I work on a new book, fulfill computer activities/phone calls, or watch Netflix, The P.M assistant helps with more exercising, personal care, and sleep-ready activities.

How long have you known you are living with FA? My official diagnosis was in 1998, however, my family and I, knew something was wrong a few years prior. It has been 19 years diagnosed with FA.

Are there any others with FA in your family? No one in my family, except me, has FA.

Describe your transition from walking to walker/wheelchair with FA. I maintained walking until college. I transitioned to a scooter around campus, then 18 months later, a wheelchair. For me, it was a tough transition. Every transition I make, from equipment to home modifications reminds me of disease progression. To some degree, it’s always an emotional process. 

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Rachel Manring

RachelManring1Name: Rachel Manring

Age: 25

Where do you call home? I call Pittsboro, NC my home because I grew up there. I currently live in Durham, NC because my FA symptoms have progressed significantly so I live with my husband and his parents so I can get more help.

Education: I have a high school diploma but walking through high school became difficult and almost impossible halfway through my freshman year. At that point I was too embarrassed to use a wheelchair or a walker so I finished high school online. After that, I completed a few online certification courses in early childhood development, child psychology and similar subjects.

By having FA and working in childcare, I can teach children acceptance of others with disabilities, which I believe is an important lesson to learn at a young age.

What is your relationship status? Do you have children? Who do you live with? On April 7th, 2014, I got married to a wonderful, understanding, helpful, and kind man. His name is Harrison Hill. He is always understanding and willing to help. We live on the third floor of his parents house (with our 11 dogs). Harrison carries me up and down the stairs. He helps me in the bathroom, in the shower and he even shaves my legs. We do not have children but I would really love to one day. 

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