Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

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

Subscribe to the Ambassabors Blog

Get new posts from the Ambassadors Blog sent directly to your inbox


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!


 

Alex Merriam

AlexMerriam1Name: Alex Merriam

Age: 41

Where do you call home? Born and raised in the San Joaquin Valley, Central California.

Education (degree(s): Bachelors of Arts in criminal justice in 1999, and a Juris Doctorate in 2004.

How does FA affect your career? So far, FA has had no effect on my career goals other than to make me more driven to success. I am the managing attorney of the local law office of a statewide law firm.

What is your relationship status? I married my high school sweetheart. We met when we were both 17 years old. We will celebrate our 20th anniversary in June. Do you have children? Yes, I have three amazing children ages 6, 8, and 10.

What's a typical day for you? I am a typical attorney who some may call a workaholic. I get up at about 5 AM so I can be to work by 6:30 AM, and then I leave work 12 hours later at approximately 6:30 PM. I certainly enjoy my work or I would not spend so much of my time doing it. The law is an excellent profession for anyone living with FA. I have been able to complete and, in fact excel in my position as an attorney. Since this is a profession of the mind and not the body, the playing field has been leveled.

How long have you known you are living with FA? I was diagnosed by DNA test when I was 24 years old. Therefore, I have been living with FA for about 16 years. I did not show any symptoms until I was 22 years old in law school, when I first started noticing that I had to concentrate in order to walk straight down a hallway or walk on a sidewalk curb. It was so slight that I thought it was all in my head. I then started feeling dizzy and off balance so I thought it was an inner ear problem. I went to many doctors and had many different tests performed. I finally visited a neurologist in Loma Linda, CA who knew right away that I had some sort of ataxia. He then ordered the DNA test. I was diagnosed in 2002. I was able to continue to participate in my usual activities until approximately 5 years ago. I then started falling which led to multiple serious injuries requiring multiple surgeries. 

Add a comment
Read more: Alex Merriam

Mindaugas Tiscenka

MindaugusT1Name: Mindaugas Tiscenka

Age: 28

Where do you call home? Siauliai, Lithuania, Europe.

Education (degree[s]): Business Administration Bachelor's Degree

What is your relationship status? Single. Do you have children? No

What's a typical day for you? Wake up, do exercises, go to work, enjoy life.

How long have you known you are living with FA? It started when I was 16. Now I have now lived with FA for 12 years.

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

Add a comment
Read more: Mindaugas Tiscenka

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. 

Add a comment
Read more: Adam Griffies

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. 

Add a comment
Read more: Allie Kittel

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!

Add a comment
Page 5 of 76

SHARE

FacebookTwitterLinkedinShare on Google+
Family B.jpg

 

Archived in
  the Ambassador Blog