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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!


 

Teen Hangouts - December 2017

TeenHangouts Dec17The FARA Ambassador Program is excited to announce the second Google hangout for teenagers with FA. It is an hour-long web-based hang out. If you don't have FA, you are not allowed to participate in the hangout. There will also be two or three adult FARA Ambassadors present. The adults will be there just to help keep the conversation safe and going. We have themes for discussion, but they are just to give us a framework we don’t have to talk about the theme. Hopefully it is a way for you to connect with other people experiencing similar if not the same things as you.

The theme this month will be: what are you grateful for in 2017 and what are you looking forward to in 2018?

When:  Thursday, December 21 @8-9PM ET for teens ages 13 to 19. (Please note: all the teens will be together this month, but we plan to host separate hangouts for young and older teens in the future.)

Where: On Google hangouts so if you have access to the Internet and speakers and a camera on your device you can come!

How: you need to get your parents or guardian to sign a consent form (click HERE). This should be emailed to jeantw62@gmail.com. Parents/guardians can also ask questions at this email address. Additionally, they can get a consent form here if they need to. Then, email farateenhangouts@gmail.com and request to join. A minimum of a half hour before the hangout opens you will be sent a link to join the hangout.

Please send us an email to either address if you have questions!

See you soon!

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Anna Morrow

AnnaMorrow1Name: Anna Morrow

Age: 11

Where do you call home? Baltimore, MD

Education: 6th Grade

Who do you live with? I live with my parents, sister Maggie, brothers Patrick and Sam, and dogs Libby and Delta.

What's a typical day for you? I get up get ready and go to school, I get home do my homework. After my school work is done, I have some free time so I will play with my siblings and/or ride my trike around the neighborhood.

How long have you known you are living with FA? I was diagnosed in June of 2015, when I was nine years old.

Are there any others with FA in your family? NO

What do you like to do to stay active and what type of exercises work for you to stay strong? I work out twice a week doing strength training and core exercises at a fitness studio in my neighborhood. I also love to ride my trike a lot.

Do you have any hobbies or special interests? I am a big Ravens fan. I also like to ride bikes and my trike with my family.

When FA gets you down, what do you think/do to feel better? I think of all my friends with FA and know that their going through this too and I’m not alone.

Tell us a little more about you. I love football and when I grow up I would like to work at the NFL. I also would like to travel to all of the rideATAXIA events.  Add a comment

Read more: Anna Morrow

Amy LaPorte

AmyLaPorte1Name: Amy LaPorte

Age: 38

Where do you call home? Omaha, Nebraska

Education (degree(s): I didn’t finish college. The doctor who diagnosed me told me to stay home and enjoy my baby with whatever time I had.

What is your relationship status? Do you have children? I am married with four children (20, 18, 15, and 12).

What's a typical day for you? “Typical” is a word not often used since my diagnosis of Friedreich Ataxia (FA). Normally, I wake up with my husband, and he wakes our two youngest boys After he leaves for work, my mom comes to our house daily, she helps me prepare for the day,. She takes the boys to school, then comes back to our house and takes me to the gym. I go to the gym five days a week for approximately two hours. After the gym, I run errands if necessary and go back home for lunch. Following lunch, I enjoy reading or watching TV - my leisure time! My boys come home from school mid-afternoon. I make dinner (often with my kids help). My husband comes home from work late afternoon, and we enjoy our time together until we call it a day.

How long have you known you are living with FA? I was officially diagnosed when I was 20, but knew there was something wrong around 16. I am 38 years old now.

Are there any others with FA in your family? I had never heard of FA before my diagnosis. 

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Read more: Amy LaPorte

Megan Rush

MeganRush 1Name: Megan Rush

Age: 33

Where do you call home? North Baltimore, Ohio

Education (degree(s)): Bachelor’s of Science in Health Information Management

How will FA add to your future [career]? I currently work at a Durable Medical Equipment place. I have had many opportunities to share my own experience using certain items. People seem to appreciate my view on things.

What is your relationship status? Married for 4 years.

Do you have children? 2 - a boy(2) and a girl(8).

What's a typical day for you? I wake up at 6 and get my kids ready for the day, I drop my son off at the babysitter’s house and my daughter at school. I then go to work from 8-5 or 5:30. I come home, figure out dinner and get the kids ready for bed (unless there are sports)…that’s it. I work part-time for now so it’s only 3 days a week. My off days, I stay at home with the baby. Sometimes I run errands and sometimes not.

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed when I was 18. I was a senior in high school. Before that, I was very athletic, (track and volleyball mainly). I was picked on because of the way I ran, I was clumsy, I started having migraines and I went to neurologist. While I was there, I asked him about my walking and the tests began. 

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Read more: Megan Rush

3rd Annual Costume for a Cure

CostumeforaCure2017The 3rd annual Costume for a Cure was held on November 4, 2017. Costume for a Cure is an annual fundraiser, hosted by me, Chelsea Conley, in St. Clairsville, Ohio (near WV and PA). It consists of Halloween Costumes, a DJ, dancing, dinner, and Chinese Auctions. This year there was also face painting and Jingles, the balloon artist. We also had a 50/50 this year. The winner received $300 and donated $100 back.

ALL proceeds go to FARA for research for a cure/treatment for Friedreich's Ataxia (FA). This year's theme was Hocus Pocus, so there were witch decorations and witch themed desserts. The dinner menu consisted of chicken, ham, hot dogs, stromboli, cheesy potatoes, green beans, and calico beans.

Everything was delicious and the night was very enjoyable. There were five people with FA present; Beth Hanes, Lilly Lucas, Drake Hampp, Ashlea Smith and myself. Ashlea gave an excellent speech about FA on behalf of the FARA Ambassadors.

Costume for a Cure raised almost $8,000 this year!  Add a comment

Read more: 3rd Annual Costume for a Cure
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