Name: Omega A. Urban
Age: 41
Where do you call home? the Florida Panhandle.
Education (degree(s): I graduated from The University of West Florida in 2009 with a BA in Interdisciplinary Social Sciences, with focuses on Psychology and Criminal Justice. I am planning to take some online classes soon, focusing on writing and proofreading, to better enable me to do freelance work in that area.
Who do you live with? I live with my husband Larry, our eleven-year-old daughter Emmalee, our nine-year-old lab mix Kenzie, and our newest addition, our one-year-old highly energetic Plott Hound Nillie.
What's a typical day for you? I am a stay-at-home mom. I typically sleep in and start my day off slowly, letting my husband take care of the morning necessities. I'm a night owl and often suffer from insomnia, so mornings are not my favorite time of day! By late morning, I am awake and doing various things on my laptop or phone like playing games, watching Twitch, writing, designing documents and charts, listening to podcasts, and/or chatting with friends. When my daughter gets home from school in the afternoon, I help her with homework and spend time with her (if she wants!). My husband cooks dinner in the evening, and we all eat together, usually over an episode of Bob's Burgers - unless I am modding a Twitch stream for my friend that evening. At night, I sometimes play a game with my daughter, read, listen to more podcasts, and/or get back on my laptop.
FARA Ambassador Program
FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.
The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.
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:
The Ambassador Blog
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!
Omega A. Urban
- Details
- Category: Meet the Community
Brittany Sommerfield
- Details
- Category: Meet the Community
Name: Brittany Sommerfield
Age: 28
Where do you call home? Manitoba, Canada
Education (degree(s): : It’s at a complicated point. I was (still am) a travel agent. Most recently I worked from home casually but as many others in the industry, the COVID-19 pandemic hit hard. I took a break and I found new focuses. I am a FARA ambassador on the leadership team, I do bookkeeping work on my father’s self-employment, I volunteer with APC (Assiniboine Park Conservancy- mostly at the zoo) and other odd jobs.
What is a current goal you have with your education? I am thinking of focusing more professionally on bookkeeping, hopefully remaining in the travel industry. I will absolutely remain within the ataxia community, of course it personally interests me, I also learn so much and it is very rewarding being with FARA, Ataxia Canada, and other organizations. Working with APC is new but I love it and I don’t plan to leave.
Who do you live with? My parents. They are pretty good roommates.
What's a typical day for you? It tends to be different. Weather is a huge factor. I’ll work-out, I’ll plan video calls or have zoom meetings a couple times a week. GST reports, timesheets, email cleanouts, family time (I have 2 sisters and 3 nephews and we are very close), house chores, seeing some friends, going to the local zoo or park to volunteer; these are just some things that are always in my week. It helps my mental and physical health to be busy (within reason).
Jafar Marizapoor
- Details
- Category: Meet the Community
Name: Jafar Mirzapoor
Age: 25
Where do you call home? I am an Afghan refugee and currently I live in Iran.
Education (degree(s): I am graduated from high school and I study computer by myself
Who do you live with? With my parents and siblings (they are patients too)
Joseph Boon
- Details
- Category: Meet the Community
Name: Joseph Boon
Age: 32
Where do you call home? Palmerston North, Aotearoa New Zealand
Education (degree(s): Bachelor of Arts double major from Victoria University of Wellington. I am considering getting a further teaching qualification, but I haven’t made up my mind.
Who do you live with? I live with my sister.
What's a typical day for you? I spend my days painting, drawing, reading, writing letters, exercising, dog walking, watching good films and TV, and spending time with my young nieces and nephew. I also like to meet friends in cafes. Depending on my level of energy I may do any, or all of these things in a normal day.
Teen Hangout September 10
- Details
- Category: Hangouts
Join the FARA Ambassadors for a hangout for teenagers with ataxia. FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. There will also be at least two adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going.
At this hangout, we will talk about pets and service animals. Bring pictures or put your pet/service animal on camera…we want to see the cuteness!!! How is your pet/service animal there for you? Do you have funny stories?
When: | Saturday, September 10th 1 - 2 PM ET (The hangout opens 15 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: teens of all ages will be together) |
Where: | On Zoom 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. This should be requested from and emailed to Madelyn at 18 and over: just let us know that you want to come by emailing us at Been before? If you already have permission or you’re 18+, Jean will email you the invitation to the Zoom hangout without you requesting one. You can come or not as you see fit! If you don’t get one, email Jean at Pop an email to |