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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!


 

Chelsey Sommerfield

ChelseySommerfieldName: Chelsey Sommerfield

Age: 27

Where do you call home? Winnipeg, MB, Canada

Education (degree): Administrative Assistant

Who do you live with? I live with my parents and sister at the moment.
Had my own apartment which I loved but after rent and bills I was not saving for the future.

What's a typical day for you? Monday through Friday I usually start my day around 6:00 in the morning. I work full time 8:30-4:30 and then I usually go to the gym before or after work.

How long have you known you are living with FA? (When and how were you diagnosed?) Diagnosed at 17, almost 10 years ago. Through months of going to different specialists they ended up sending our DNA to Ottawa to get tested and that’s when the figured it out.

Are there any others with FA in your family? My little sister, Brittany Sommerfield, whose three and half years younger than me.

Describe your transition from walking to walker/wheelchair. Transferring from walker to wheelchair doesn’t happen overnight. At about age 21, I started using a walker. At first it was only sometimes, but then eventually it became all the time. But then I started falling and once I began falling in public. I started using a wheelchair when outside the home. At the age of 23, I had surgery on my stomach and that’s when I began using my wheelchair all the time. Now I have a power chair and a manual chair depending on how productive I need to be (If I’m at work or need to run errands I’ll take the power chair) where I am (Won’t use the power chair in someone’s apartment as I will most likely put holes in the walls haha) and how I’m travelling (If its someone’s personal car I’ll need the manual, city bus I’ll need the power and with handi transit its vice versa).  Add a comment

Read more: Chelsey Sommerfield

Yesenia Ramos

YeseniaRamos1Name: Yesenia Ramos

Age: 20

Where do you call home? Edmond, Oklahoma

Education (degree(s): I feel limited on my physical abilities I haven’t considered it, besides I am not sure how I can get financial help for my school and I don’t want to depend on my parents.

What is your relationship status? Who do you live with? I’m single; I currently live with my parents and brother

What's a typical day for you? A typical day for me, stay home, play video games, watch movies, read and write, depending on my mood.

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed when I was 11 years old, so it’s been about 9 years. My mom would notice that I walked imbalanced or like a drunk. She compared my symptoms to my brothers and took me to MDA (muscular dystrophy association) to get checked and tested. They called my mom and told her I came out positive for Friedreich’s Ataxia.

Are there any others with FA in your family? I have an older brother, Aaron Ramos, who is 26 years old.

Describe your transition from walking to walker/wheelchair. When I was in 5th grade I was diagnosed and I remember warning all my friends that in 6th grade (middle school) I was going to be in a wheelchair. When I finally entered middle, all my friends looked at me like what I had was contagious, like they were afraid of me now. I went from popular to an outcast.

What do you like to do to stay active and what type of exercises work for you to stay strong? I do very little physical exercise, but I maintain my self strong mentally. The way I do it is talking to family and friends and giving them motivation. 

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Read more: Yesenia Ramos

Adam Kiess

AdamKiess1Name: Adam Kiess

Age: 38

Where do you call home? Wichita, KS

Education (degree(s): Bachelors of Arts in Communications with an emphasis in Broadcast Journalism – Wichita State University

What is your relationship status? Who do you live with? Single. Parents and sister.

What's a typical day for you? Workout at YMCA, watch TV.

How long have you known you are living with FA? September 1997. Blood test.

Are there any others with FA in your family? Yes, my sister, Andrea.

Describe your transition from walking to walker/wheelchair. I tore meniscus twice in my knee, so decided wheelchair would be better and safer for me. 

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Read more: Adam Kiess

FA Hangouts - October 2017

FAHangouts1017The FARA Ambassador Program presents an FA Hangout talking about: your biggest fear. Get spooky with Jake & Lake at this month's hangout.

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, October 24; Wednesday, October 25; and Thursday, October 26 (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 ET 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!

Add a comment

Clifton Raspberry

CliftonRaspberry1Name: Clifton Raspberry

Age: 35

Where do you call home? Spring, TX

Education (degree(s)? High School. I was an equipment operator and truck driver.

What is your relationship status? Do you have children? No, I am not married, and have no children.

What's a typical day for you? My daily routine changes. Errands, chiropractor visits, maybe wrench on a truck, caregiver visits, seeing my girlfriend, and/or watching TV in the evenings are typical.

How long have you known you are living with FA? I was diagnosed in 2004. Started showing signs in 2001. 

Are there any others with FA in your family? No others. I am adopted.

Describe your transition from walking to walker/wheelchair and/or any other adaptation you have had to take due to living with FA. After nearly breaking my foot, I decided to use adaptive equipment, and use a walker. My additional adaptation has been learning to hold on to things when I walk. 

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Read more: Clifton Raspberry
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