Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

April Teen Hangout 2020

April Teen hangoutJoin the FARA Ambassadors for a hangout for teenagers, 13-19, with ataxia (of any form). FA Teen Hangouts are hour-long web-based hangouts. If you don't have ataxia, you are not allowed to participate in the hangout. This is simply a place to meet and talk to other people who may be going through struggles and good times similar to you. There will also be at least three adult FARA Ambassadors present. The adults will be there to help keep the conversation safe and going. FARA Ambassador Kyle Waterman will lead April's hangout.

The theme will be: "FARA Events" a place to find friends, fun, and community. Have you been to an event, tell us how it went. Thinking about going to an event? Learn what other teens think. Learn how to find an event near you. Join us to talk or just listen. We are sure you'll find you aren't alone! It is just a relaxed conversation...the theme gets us going, but we definitely don't stick to it!

Marieke Van Driel

MariekeName: Marieke van Driel

Age: 28

Where do you call home? Eindhoven (the Netherlands)

Education/degree: At Eindhoven University of Technology, I received my Master of Science (biomedical engineering) at the age of 24. My career started at the innovation site Eindhoven at Philips for two years full-time. Afterward, I kind of retired because of a lack of energy. However, I like to be busy, and I signed a small contract at Eindhoven University of Technology. My role is to help set up the education of biomedical engineering.

Who do you live with? I live on my own.

Noah Griffith

NoahHi! My name is Noah Griffith, and I am 18 years old. I live near Auburn, Alabama, and I am a freshman in college at Southern Union! I plan to major in journalism in hopes of becoming a sport's writer. I have always had a passion for sports, particularly with baseball and basketball,
and this career is how I want to continue to be in the sport's world since playing is not an option anymore.

I was diagnosed with Friedreich's Ataxia in April of 2018, just before my 17th birthday. The time leading up to my diagnosis was rough. I had started experiencing symptoms with no explanation as to what was happening. When I noticed running and lifting weights was getting
more difficult, I began visiting many local doctors and therapists (and most of them had no idea what FA was), until I was finally sent to a neurologist at UAB who diagnosed me.

Marina Deszo

MarinaHello everyone!


My name is Marina Deszo, and I am 30 years old. I am from a city near Sao Paulo, Guarulhos, in Brazil. My family was there, but I moved on to Sao Paulo city living, almost, on my own. I share a place with roommates since the beginning of college, and I am still there.

Talking about AF, I was diagnosed with 17, but I have had symptoms since I was 10. It was a relief to find a cause for the stranger way I felt about my body, but also anguish for an incurable condition. Fortunately, I was surrounded by family and very good friends, that always give me the strength to move on, besides all the struggles that we all patients deal with. Something like balance, walk, and strength problems.

Collin Straathof

CollinName: Collin Straathof

Age: 26

Where do you call home? the Netherlands

Education degree(s): Bachelor Sports marketing/Commercial economy. I work as an online marketer. This work is good for me, despite the difficulties that FA entails. I work three days at the office and also do some work at home in the field of online marketing.

Who do you live with? I live with my parents but often live with my girlfriend.

Subcategories

FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

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!


Page 9 of 213

SHARE

FacebookTwitterLinkedInYoutube
Science D.jpg

 

Archived in
  Scientific News


 

 

Tagged in
FARA Scientific News


Site Map     Privacy Policy     Service Terms     Log-in     Contact     Charity Navigator