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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!


 

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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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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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!

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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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Celebrating the Joy of Happiness

CelebrateHappiness1Each year for almost ten years my family has hosted a fundraiser for FARA, something we like to call, “An evening to find a cure.” This year’s theme was happiness. The event took place on September 22nd at the Owenego Inn and Beach Club in Branford, CT. The evening was filled with psychic readings, reiki sessions, tons of fun raffles, and dinner catered by Outback Steakhouse. The happiness theme was sprinkled all throughout the evening. The center pieces on the tables included books about happiness which were party favors for people to take home. In addition, speeches were given throughout the night by special guests on what happiness means to them. It was a magical night with 230-240 attendees.

The event took months to plan. We are luckily enough to have the best neighbors in the world who make up the fundraising committee. Preparing for the event took many long hours, but it was worth it. It is always worth it knowing we are one step closer to finding a cure. We forgot about all the hard work as soon as we saw the room filled with happiness, support, and hope. A room full of friends. 

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