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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!


 

Elizabeth Bowen

ElizabethBowen1Name: Elizabeth Bowen

Age: 34

Where do you call home? Hilton Head Island, South Carolina, born and raised.

Education: I have attended some college. I used to think it was very important to obtain a degree. But now I feel like as long as I can continue to learn new things, I’m good. I very much hope to write a book sometime in the future.

Who do you live with? I am divorced and have two children. I live with my parents and two out of three of my younger brothers. I am currently in a deeply committed relationship with my cat.

What's a typical day for you? I don’t exactly have typical days. Sometimes I have appointments, head to the gym, maybe I’m doing volunteer work, or maybe I’m spending time with my mom, painting and watching TV.

How long have you known you are living with FA? When I was 12 years old, I went to get a physical from the doctor in order to play basketball for my school and he diagnosed me with scoliosis. I began seeing an orthopedist to treat my curved spine and he believed that I might be suffering from another condition, ordering a DNA test. When I was 14 years old, I was diagnosed with FA. 

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Cure FA Soirée: React with Music

CureFA Soiree 1The super amazing and fun ‘Cure FA Soirée: React with Music’ was a benefit for FARA featuring musical performances of friends & local talents Renee Anderson, Whiskey and Pie, and Jamie Bramble; plus updates from Michael Gehr, Kyle Bryant, Dr. Angel Martin & Dr. Sanjay Bidichandani (who was part of the team that discovered the FA gene in ‘96).  It was held on April 14th, 2018 in Edmond, Oklahoma, and it was put together by Michael Gehr and his parents: Eric & Liz. I had the pleasure of being a part of this event with the special invite from the Gehr family. I drove over to Edmond from St. Louis with relatives of the Gehr’s. We arrived Friday the 13th, and had non- stop fun until we left Sunday the 15th. I enjoyed dinner and a downtown exploration with the Gehr’s Friday, met new faces before and during the event on Saturday and concluded with an intimate brunch with some participants of the Soirée on Sunday.

The theme of the Soirée was ‘React with Music’, which comes from the tagline of The Ataxian documentary, “Life is About how We React.”  Michael and his family are all singers, and all have a great love of music. In school, Michael has always enjoyed singing, and he has participated in choir, musicals & talent shows since 3rd grade. Many of his closest friends are involved in Heritage Hall Performing Arts. (Heritage Hall is a college prep school Michael has attended since preschool.) “It was wonderful to hear performances of many of Michael’s friends from school, and a high point of the evening was Michael’s mostly solo performance of the song ‘Creep’, with backup from the school choir.” - Liz Gehr 

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The Miller Family

Miller Family 1 

Name: Sean and Ryan Miller

Age: Sean (8), Ryan (6)

Where do you call home? Denver, Colorado

Education: Sean (3rd), Ryan (Kindergarten)

Who do the boys live with? They live with their parents and 2 older siblings.

What's a typical day for you? A typical day involves getting ready for school, going to school, playing with friends, playing video games and watching some YouTube.

How long have you known Sean & Ryan are living with FA? Sean was misdiagnosed with CMT at the age of 4. There was something always off with his gait and he fell more than other children his age. It wasn't until we had an abnormal EKG and discovered cardiomyopathy, that the cardiologists suggested FA instead of CMT. We had a blood test done and it was confirmed when Sean was 5.

Ryan doesn't show symptoms (only notice minor balance issues, but would not know unless you know about FA). We wanted to get him tested for FA, because we just wanted to know. Ryan also tested positive for FA when he was 5.

Are there any others with FA in your family? No one else besides Sean and Ryan that we know of.

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Beverlee Blackston

Name: Beverlee BlackstonBeverleeBlackston1

Age: 30

Where do you call home? Paducah, Kentucky

Education (degree(s): Associate's Degree in Arts and Bachelor's Degree in Communications and Theater

What is your relationship status? Do you have children? I'm married and have a 3 year old daughter, Freya. I've been married for 7 years.

What's a typical day for you? I wake up around 7:30 when my daughter wakes me up. We watch cartoons and play with her toys until naptime. When she takes a nap I do my Yoga practice and meditate, sometimes I write or practice my divination with Runes or Tarot Cards. When Freya wakes up we have dinner and play until bedtime. When the weather is nice we spend a lot of time outside on our farm.

How long have you known you are living with FA? It's been 10 years since I was diagnosed. December 2007 was when I found out. My husband noticed that something was off so he told me I should go to the doctor. It took awhile, but they finally figured it out.

Are there any others with FA in your family? I'm the only person on both sides of my family that has FA. 

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FA Hangouts - April 2018

FAHangouts April18The FARA Ambassador Program presents an FA Hangout talking about: Life Hacks! Allie and RJ are leading the discussion. So this is the perfect opportunity to learn some special tricks for living 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 April 24th, Wednesday, April 25th, and Thursday, April 26th (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 EDT 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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