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Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail This email address is being protected from spambots. You need JavaScript enabled to view it. if you would like to be interviewed for a Meet the Community post.
 

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!


Silvia

Details
Category: Meet the Community
Published: Monday, November 27, 2023
Silvia Name: Silvia

Age: 18

Where do you call home? Paraíba, Brazil

What is your education [degree(s)]? What is a current goal you have with your education? I am in my third year of high school, I intend to study nutrition.

What's a typical day for you? Gym, then school

How long have you known you are living with FA? For 5 years.

Describe your transition from walking to walker/wheelchair: It was difficult, but seeing that I REALLY had no choice, I went to a walker.

What do you like to do to stay active and what type of exercises work for you to stay strong? I go to the gym, Pilates, and cardio on the treadmill.

Katie SneadDo you have any hobbies or special interests? I like reading.

What is one way living with FA has POSITIVELY affected your life? In finding true friendships.

What is a piece of advice that someone with FA has given you that encourages and inspires you? Don't give up, medicine won't let us down.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Now that you have a diagnosis, you can fight for recognition.

What is the first thing you want to do when a cure/treatment to FA is found? A 5km (3 miles) run or trail run.

"I have FA but FA doesn't have me." What does this statement mean to you? I try to live obeying the limits of FA but I don't let it stop me.

What do you wish the general public understood about FA or disabilities? That we can be normal within our limits.

Interviewed by
Natache Gomez

Meet the Community: Katie Snead

Details
Category: Meet the Community
Published: Monday, November 20, 2023
Katie Snead Name: Katie Snead

Age: 19

Where do you call home? Vancouver, Washington

Education: I have an AA degree and am currently in school to get my Bachelors Degree in Psychology.

Who do you live with? I live with my parents and my sister.

How long have you known you are living with FA? I was diagnosed with FA when I was 9. When I was about 7, my parents began to notice that I had trouble with my balance and keeping up with physical activities compared to other kids my age. I received testing for a brain tumor and numerous other genetic diseases before being diagnosed with FA after 2 years of testing.

Describe your transition from walking to walker/wheelchair: I started struggling a lot with walking in my freshman year of high school; when I was 14, a few months into the school year, I was having a very hard time walking independently. A teacher and great friend of mine, Tim Dibble, started letting me lean on him for support as I walked between classes; he saw my commitment to walking and did everything he could to support my wishes! I then had to go down to half days at school as I became too exhausted to get through a full day. I started doing half days every other day, all to keep walking. I was coming home after just a few hours at school and collapsing onto my couch. My relationship with walking had become incredibly toxic. I began using a wheelchair in my sophomore year, when I was 15 and I was able to attend school every day – rebuilding my mental and physical health.

Katie SneadWhat do you like to do to stay active and what type of exercises work for you to stay strong? I like to use a standing frame, push my manual wheelchair around my college campus, and transfer independently as much as possible. These three things combined together daily help me keep my body moving and help me to maintain my strength.

When FA gets you down, what do you think/do to feel better? I honestly don’t have many “bad FA days.” I have days where I’m exhausted and emotional from the constant battle with my body in my day-to-day life. I just “get on with it” every day, I get up, care for myself, care for my dog, go to school, and treat myself with kindness every step of the way.

What is one way living with FA has POSITIVELY affected your life? In many ways, FA is the most positive thing in my life. I have traveled all over the country to participate in research studies, I’ve met amazing people, and I’ve gained such a unique perspective on life. I wouldn't have any of these things if I didn’t have FA, and I couldn't imagine that.

What is a favorite motivational quote of yours? Let life be what it is instead of what you think it should be.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Life will work out. You will always find a way to adapt to your circumstances. It’s okay to have to reevaluate things and live life differently than you expected to.

How do you live your life in the face of adversity? When you reach a point of accepting that you have FA, you will see life in the best way possible. The moment you realize that there is no one to blame for FA, it’s a random genetic sequence; you learn that things don’t need to be so incredibly heavy, you don’t need to harbor any anger, only acceptance and commitment to being grateful for all that you do have in this life!


Interviewed by
Brendan Halverson

Meet the Community 2: A Closer Look – Don Royer

Details
Category: Meet the Community
Published: Monday, November 13, 2023

Don Royer

Original MTC: https://www.curefa.org/meet-the-community/don-royer

Name: Don Royer

What do you want to discuss? My career path


When did you start this? I was laid off 1 week into COVID-19. Apparently, they found it easy to lay off the family man in a wheelchair with a life altering disability. Anyway, I have built a career worth of knowledge in the field of Occupational Safety and have always had an entrepreneur spirit. I knew no one was going to hire me in my condition. However, this wasn’t going to stop me. Beyond anything, I need to provide for my family. So, I decided in the heart of the pandemic, to start my own business. Yup, covid or not here I come…and BOOM! I started an occupational health and safety training and consulting business East Shore Safety. www.eastshoresafety.com.

East Shore Safety Logo

Of course I don’t do any of the field work or the training anymore but I hire people to help with that. So, I’ve been in business for over 3 ½ years and have made it work! As my condition progresses, I have brought my wife into the company and hope to hire my daughters soon.


What made you choose this? I should say this from a position of power (and not vulnerability) but, I did not choose it. I had to do it to provide for my family and survive. I live in Cape Cod…it’s expensive! I went to college for safety and here I am still doing it, decades later. I love it, though!


Does FA impact this? Yes, FA certainly impacts everything within the business. I cannot do the things I would like to within the business. I am more tired than many of my contemporaries, I get hurt more often doing routine things but, it is what it is…


Interviewed by

Meet the Community 2: A Closer Look – Jakob Mitterhauser

Details
Category: Meet the Community
Published: Monday, October 16, 2023

Original MTC: https://www.curefa.org/meet-the-community/jakob-mitterhauser

Name: Jakob Mitterhauser

Please share any updates since your last interview. Jakob MitterhauserIt has been 6 years since my last interview. I am still living in Vienna, finished studying and am working part time as an urban climatologist for the year. My workout routine has changed from physical therapy to intense training 4-5 times a week as I am part of the Austrian Para Rowing Team. Taking care of my health is still the main goal in my life.

What do you want to discuss? Travelling


When did you start travelling? 2012, 3 months after my FA diagnosis


What do you enjoy most about travelling? It’s the excitement of seeing new things, getting to know new countries, cultures, and people. I love speaking different languages, eating local food, and seeing beautiful landscapes.


Jakob Mitterhauser

Does FA impact this? Please share any adaptations you’ve made to be able to participate in travelling. Yes, definitely. It was way easier to travel 10 years ago. Back in 2014 in India, for example, my balance was better and I did some hiking and walking in the dark which would be more difficult these days. Nowadays I plan better, take more time to relax, do less activities, do shorter trips and care more about accessibility.


Tell us more?? Back in 2011, when I got my FA diagnosis, I was told that I’d need a wheelchair within 5-10 years. That motivated me to see the world. I’ve been to 32 countries, mostly in Europe, North America and South America. Speaking German, English and Spanish helped me a lot.

Tiffany Rose GambillI started slowly 2012 in Spain, saw Costa Rica in 2013 and India and Canada and the US in 2014. Then I was “infected with the travel fever”. I did major trips every year for 2-5 weeks. I fell in love with South America in 2015 while hiking up Machu Pichu. It made me realize that I am way stronger than I thought and can push limits.

Then I started to incorporate FA into my travels. I traveled to the FARA Symposium in Philadelphia in 2016 and 2018, combining it with trips to Canada and Mexico. I traveled to Ride Ataxia Europe in France (2017), Germany (2019) and the Netherlands (2021). Right before the pandemic I did 5 weeks in Brazil and Peru and one week in New York and Washington at the Rare Disease Week.

Recently I’ve focused more on traveling in Europe, visiting Greece, Ireland and France, for example. Seeing new places gives me a lot of motivation to stay strong. One of my favorite things is to visit my FAmily all over the world. I’ve been invited to so many houses and every FAer is welcome in my apartment in Vienna.


Interviewed by: FARA Ambassador Scarlett Olivia Drews

Meet the Community 2: A Closer Look – Tiffany Rose Gambill

Details
Category: Meet the Community
Published: Monday, September 18, 2023

Original MTC: https://www.curefa.org/meet-the-community/tiffany-rose-gambill

Name: Tiffany Rose Gambill

Please share any updates since your last interview. Tiffany Rose GambillHopefully you remember me, if not or if you were recently the lucky one to get diagnosed with FA, welcome, my name is Tiffany, I’m 32 or 33, when you hit 30 the years are whatever, except for milestones! I still live in Bridgewater Massachusetts with my parents, we built an accessible apartment!

Where do you work? I am still working 3 days a week with the same company. I fill tubes with freshly minted silver coins to be shipped out. I also help HR, right now I’m making an excel of Christmas gifts bought as the company's yearly toy drive, we buy for 80+ families. I am more of the office's ray of sunshine!


Are you in a relationship? Still single, but guys are too needy and dramatic. And I don’t want to marry a guy then in a few years my FA gets worse and they feel trapped, just personal.


How long have you known you are living with FA? Been living with diagnosed FA for 16 years.


Tiffany Rose Gambill

Are there any others with FA in your family? I am the only family member with FA.


What do you like to do to stay active and what type of exercises work for you to stay strong? I do have a trainer who I see once or twice a week, we work on upper body strength, and he kicks my butt. I also go to physical therapy 2x a week. I have a stander at home that I don’t use enough and I walk my dog in a scooter and do agility with her and my mom pushes me.


When FA gets you down, what do you think/do to feel better? [I think of] the Instagram reel where the husband asks when life gets you down, what do you think/do to feel better? And the wife answers that we search for flights.


What is a favorite motivational quote of yours? “Life is not always a matter of holding good cards, but sometimes, playing a poor hand well.” –Jack London


Tiffany Rose Gambill

What is the best advice YOU could give to a person who has been newly diagnosed with FA? KEEP SINGING. When someone says you can’t, show them you can!


What is the first thing you want to do when a cure/treatment to FA is found? Stay tuned! My hope is that it improves my speech.


What is one way living with FA has POSITIVELY affected your life? So I travel a lot, all over the world. Last year in Alaska, my mom and sister told me again that I should document this for other wheelchair users. I kept thinking, so I started an Instagram and a TikTok under the same name, but I need tik tok lessons! Then when I was in Austria I bought my URL. Now typing is slow and hard, so I haven’t published many blogs yet, and it’s not on google yet! I need an IT man! I suffer from migraines which happen a lot and those days knock me off my butt. The blog is hard –– I type it up then my friend edits it. I have to hyperlink so much, upload pics and resize and organize them, include tags, then check it.


Tiffany Rose Gambill

When did you start your Instagram? I started 6 months ago. My blog I am still starting, typing is hard.


What made you choose this? I love to travel, and I know with any type of disability travel is intimidating and scary; I want to show them the accessible things I did and show that traveling is possible.


Does FA impact this? Please share any adaptations you’ve made. My mom talks on the phone for me when booking a hotel, asking about the roll in shower and reserving transportation. I have a manual chair that hates cobblestones, sand, crushed rock or rough dirt, I got a third wheel that lifts my caster wheels which is what gets stuck a lot. A lot of times buildings aren’t accessible, for example, we went to Germany to a beautiful castle that wasn’t accessible, but I was fine with sitting outside and taking in the view, while my parents went inside and took photos for me, but I had the better view. I currently am in a manual chair, so they push me everywhere and I keep in mind how far they’ll walk. I also can’t transfer on my own, so I need to travel with someone.


Interviewed by

  1. Sam Bridgman
  2. Lilly Woods
  3. Robbi Van Schoick
  4. Duncan Collins
  5. Kiara Lynch–Owen

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Ambassador Blog Archives

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Oct 07, 2021 Meet the Community

Kate Annetts

Name: Name: Kate Annetts Age: 38 Where… More
Oct 04, 2021 Meet the Community

Snehal Shinde

Name: Snehal Shinde Age: 25 Where do… More
Sep 28, 2021 Hangouts

FARA Teen Hangouts - September 2021

Join the FARA Ambassadors for a hangout… More
Sep 27, 2021 Meet the Community

Maria Monteiro

Name: Maria Monteiro Age: 26 Where do… More
Sep 16, 2021 Meet the Community

Eva Eisenköck

Name: Eva Eisenköck Age: 35 Where do… More
Sep 09, 2021 Meet the Community

Sophia Sieber-Davis

Name: Sophia Sieber-Davis Age: 30 Where… More
Sep 08, 2021 Hangouts

FARA Teen Hangouts - September 2021

Join the FARA Ambassadors for a hangout… More
Sep 07, 2021 Meet the Community

Tony Henri

Name: Tony Henri Age: 28 Where do you… More
Aug 26, 2021 Meet the Community

Keylla Patricia Melo

Name: Keylla Patricia Melo Age: 44… More
Aug 25, 2021 Hangouts

FARA Teen Hangouts - August 2021

Thursday, 8/26 7-8 PM ET Join the FARA… More
Aug 23, 2021 Hangouts

FA Hangouts - August 2021

Noelle and Allison like to read! Do… More
Aug 23, 2021 Meet the Community

Kai Eickler

Name: Kai Eickler Age: 33 Where do you… More
Aug 13, 2021 Meet the Community

John Cernosek

Name: John Cernosek Age: 38 Where do… More
Aug 06, 2021 Meet the Community

Madison Hardwick

Name: Madison Hardwick Age: 20 Where do… More
Jul 28, 2021 Meet the Community

Cristian Florian Bondarenco

Name: Cristian Florian Bondarenco Age:… More
Jul 26, 2021 Meet the Community

Shelby Wright

Name: Shelby Wright Age: 25 Where do… More
Jul 20, 2021 Hangouts

FA Hangouts - July 2021

Jake and Morgan are interested in… More
Jul 19, 2021 Meet the Community

Caroline Spencer

Name: Caroline Spencer Age: 33 Where do… More
Jul 08, 2021 Meet the Community

Christiane Wick-Jüttner

Name: Christiane Wick-Jüttner Age: 54… More
Jul 06, 2021 Meet the Community

Ribar Mohamad

Name: Ribar Mohamad Age: 30 Where do… More
Jun 25, 2021 Meet the Community

David (Dave) Arnold

Name: David (Dave) Arnold Age: 36 Where… More
Jun 21, 2021 Hangouts

FARA Teen Hangouts - June 2021

Thursday, 6/24 7-8 PM ET Join the FARA… More
Jun 21, 2021 Hangouts

FA Hangouts - June 2021

Who are your heroes? Are they fictional… More
Jun 17, 2021 Meet the Community

Leila Filgueiras

Name: Leila Filgueiras Age: 42 Where do… More
Jun 14, 2021 Meet the Community

Nikolaos Kotsomouras

Name: Nikolaos Kotsomouras Age: 44… More
Jun 07, 2021 Meet the Community

Scott Armit

Name: Scott Armit Age: 32 Where do you… More
Jun 01, 2021 Meet the Community

Silvana Camaj

Name: Silvana Camaj Age: 24 Where do… More
May 19, 2021 Meet the Community

Silvany Guimarães Coelho Cotting

Name: Silvany Guimarães Coelho Cotting… More
May 19, 2021 Hangouts

FA Hangouts - May 2021

Brittany and Erin want to hear your… More
May 17, 2021 Meet the Community

Emily Young

Name: Emily Young Age: 25 Where do you… More
May 06, 2021 Hangouts

FARA Teen Hangouts - May 2021

Saturday, 5/8 1-2 PM ET Join the FARA… More
May 05, 2021 Meet the Community

Indiamara Zanandréa

Name: Indiamara Zanandréa Age: 31 Where… More
Apr 30, 2021 Meet the Community

Megan Sonja Clegg

Name: Megan Sonja Clegg Age: 25 Where… More
Apr 22, 2021 Meet the Community

Amanda Oliver

Name: Amanda Oliver Age: 18 Where do… More
Apr 21, 2021 Ambassador

Chrysanthi Zouva

Hi! My name is Chrysanthi, I am 37… More
Apr 19, 2021 Hangouts

FA Hangouts - April 2021

How do you make friends? Do you have… More
Apr 16, 2021 Meet the Community

Maria Sobotka

Name: My name is Maria Sobotka. I don’t… More
Apr 16, 2021 Ambassador

María Mercedes Sebastián

My name is María Mercedes Sebastián ,… More
Apr 08, 2021 Meet the Community

Dr. Georg Herdt

Name: Dr. Georg Herdt Age: 40 Where do… More
Apr 08, 2021 Hangouts

FA Teen Hangouts - April 2021

Saturday, 4/10 1-2 PM ET Join the FARA… More
Apr 01, 2021 Meet the Community

Megan Dewar

Name: Megan Dewar Age: 23 Where do you… More
Apr 01, 2021 Ambassador

Corinne Oehen

My name is Cori, I‘m 35, and I live in… More
Mar 29, 2021 Meet the Community

Ana Clara Andrade

Name: Ana Clara Andrade Age: 14 Where… More
Mar 24, 2021 Ambassador

AJ Perez

Hello, I am AJ Perez. I am 33 years old… More
Mar 24, 2021 Hangouts

FA Hangouts - March 2021

From your friends to your family… More
Mar 19, 2021 Meet the Community

Marian Soto Coronado

Name: Marian Soto Coronado Age: 50… More
Mar 12, 2021 Meet the Community

Josué Lira

Name: Josué Lira Age: 22 Where do you… More
Mar 09, 2021 Hangouts

FARA Teen Hangouts - March 2021

Saturday, 3/13 1-2 PM ET Join the FARA… More
Mar 05, 2021 Meet the Community

Sajmir Pjetri

Name: Sajmir Pjetri Age: 29 Where do… More
Feb 26, 2021 Meet the Community

Max Corrigan

Name: Max Corrigan Age: 19 Where do you… More
Feb 22, 2021 Meet the Community

María Mercedes Sebastián

Name: María Mercedes Sebastián Age: 32… More
Feb 15, 2021 Ambassador Blog

FA Hangouts - February 2021

Jake and Brittany want to know: what… More
Feb 11, 2021 Meet the Community

Vicente Salgado Pires

Name:Vincente Salgado Pires Age: 27… More
Feb 08, 2021 Ambassador Blog

FARA Teen Hangouts - February 2021

Saturday 2/13 1-2 PM ET Join the FARA… More
Feb 05, 2021 Meet the Community

Sean Sommerville

Name:Sean Sommerville Age: 21 Where do… More
Jan 29, 2021 Meet the Community

Cassydee Buttadaruo

Name: Cassydee Buttadaruo Age: 20 Where… More
Jan 25, 2021 Ambassador Blog

FARA Teen Hangouts - January 2021

Saturday 1/30 2-3 PM ET Join the FARA… More
Jan 25, 2021 Meet the Community

Trim Gjelaj

Name: Trim Gjelaj Age: 31 Where do you… More
Jan 19, 2021 Ambassador Blog

FA Hangouts - January 2021

With many of our usual activities on… More
Jan 15, 2021 Meet the Community

Cody Ryan

Name: Cody Ryan Age: 33 Where do you… More
Jan 11, 2021 Meet the Community

Alicia Aragon Cabanas

Name: Alicia Aragon Cabanas Age: 46… More
Jan 04, 2021 Meet the Community

Stephanie Magness

Name: Stephanie Magness Age: 39 Where… More
Dec 21, 2020 Meet the Community

Sandra Johnson

Name: My name is Sandra Johnson! Age:… More
Dec 11, 2020 Meet the Community

Jeremy Cowart

Name: Jeremy Cowart Age: 43 Where do… More
Dec 07, 2020 Meet the Community

Corinne

Name: Corinne Age: 35 Where do you call… More
Nov 30, 2020 Meet the Community

Frank Van Linden

Name: Frank Van Linden Age: 38 Where do… More
Nov 21, 2020 Meet the Community

Zach Gault

Name: Zach Gault Age: 22 Where do you… More
Nov 16, 2020 Meet the Community

Deniz Nascimento de Santana

Name: Deniz Nascimento de Santana Age:… More
Nov 10, 2020 Meet the Community

Mary Bircher

Name: Mary Bircher Age: 31 Where do you… More
Oct 26, 2020 Meet the Community

Christopher Robin Brian Halstead

Name: Christopher Robin Brian Halstead… More
Oct 19, 2020 Meet the Community

Andres De Vita

Name: Andres De Vita Age: I’m 30 years… More
Oct 12, 2020 Meet the Community

Fredson Nascimento de Santana

Name: Fredson Nascimento de Santana… More
Oct 05, 2020 Meet the Community

Chrysanthi Zouva

Name: Chrysanthi Zouva Age: 37 Where do… More
Oct 03, 2020 Ambassador

Sean Sommerville

Hello my name is Sean Sommerville. I… More
Sep 28, 2020 Meet the Community

Esteban Luis Grieb

Name: Esteban Luis Grieb Age: 44 (How… More
Sep 22, 2020 Hangouts

Join our Teen Hangout Thursday

Thursday 9/24 8-9 PM ET Join the FARA… More
Sep 19, 2020 Meet the Community

André de Lucca Venturini

Name: André de Lucca Venturini Age: 27… More
Sep 15, 2020 Meet the Community

Óscar Muñoz Soguero

Name: Óscar Muñoz Soguero Age: 34 years… More
Sep 05, 2020 Meet the Community

Justin Bolinger

Name: Justin (Bo) Bolinger Age: 42… More
Sep 01, 2020 Meet the Community

Dante Canuto dos Anjos Filho

Name: Dante Canuto dos Anjos Filho Age:… More
Aug 24, 2020 Meet the Community

Said Benchrif

Name: Said Benchrif Age: 30 years old… More
Aug 21, 2020 Hangouts

August Teen Hangout 2020

Join the FARA Ambassadors for a hangout… More
Aug 17, 2020 Meet the Community

Sam Archuleta

Name: Sam Archuleta Age: 16 Where do… More
Aug 10, 2020 Meet the Community

Libby Schwers

Name: Libby Schwers Age: 23 Where do… More
Jul 31, 2020 Meet the Community

Márcia Ferreira Galvão

Name: Márcia Ferreira Galvão Age: 59… More
Jul 27, 2020 Meet the Community

Zoë Graef

Name: Zoë Graef Age: 21 Where do you… More
Jul 22, 2020 Hangouts

July Teen Hangout 2020

Join the FARA Ambassadors for a hangout… More
Jul 10, 2020 Meet the Community

Brett Davis

Name: Brett Davis Age: 38 Where do you… More
Jul 09, 2020 Hangouts

July Teen Hangout

Join the FARA Ambassadors for a hangout… More
Jul 06, 2020 Ambassador

Jennifer Gasner

My name is Jennifer Gasner. My FA… More
Jul 06, 2020 Meet the Community

Matthew Jordan Penman

Name: Matthew Jordan Penman Age: 35… More
Jun 26, 2020 Meet the Community

María Luisa Ledesma Cano

Name: María Luisa Ledesma Cano Age: 27… More
Jun 22, 2020 Hangouts

June FA Hangout 2020

The FARA Ambassador Program presents an… More
Jun 22, 2020 Meet the Community

Elsaid Younes

Name: Elsaid Younes Age: 35 Where do… More
Jun 15, 2020 Meet the Community

Julia Mancebo López

Name: Julia Mancebo López Age: 51 Where… More
Jun 05, 2020 Meet the Community

Valbona Ferati

Name: Valbona Ferati Age: 34 years old… More
Jun 01, 2020 Meet the Community

Frances Clair

Name Frances Clair Age 29 Where do you… More
May 26, 2020 Hangouts

May Teen Hangout 2020

Join the FARA Ambassadors for a hangout… More
May 22, 2020 Meet the Community

Ilva Johannsdottir Madsen

Name: Ilva Johannsdottir Madsen Age: 20… More
May 18, 2020 Meet the Community

Elizabeth (Liz) Anne Clark

Name: Elizabeth (Liz) Anne Clark Age:… More
May 14, 2020 Hangouts

May FA Hangout 2020

The FARA Ambassador Program presents an… More
May 11, 2020 Meet the Community

Kayla Louise Hellegers

Name: Kayla Louise Hellegers Age: 27… More
May 01, 2020 Meet the Community

Jennifer Garner

Name: Jennifer Gasner Age: 47 Where do… More
Apr 23, 2020 Meet the Community

Lily Kate King

Name: Lilly Kate King Age: 16 Where do… More
Apr 20, 2020 Hangouts

April FA Hangout 2020

The FARA Ambassador Program presents an… More
Apr 20, 2020 Hangouts

April Teen Hangout 2020

Join the FARA Ambassadors for a hangout… More
Apr 17, 2020 Meet the Community

Marieke Van Driel

Name: Marieke van Driel Age: 28 Where… More
Mar 28, 2023 Ambassador

Noah Griffith

Hey! My name is Noah, and I am 21 years… More
Apr 03, 2020 Meet the Community

Sam and Rebecca Hill

Name: Sam Hill Age: 16 Where do you… More
Mar 30, 2020 Meet the Community

Şeyma Öztürk

Name: Şeyma Öztürk Age: 23 years old… More
Mar 20, 2020 Meet the Community

Henry Sykes

Name: Henry Sykes Age: I am 22 Where do… More
Mar 20, 2020 Hangouts

March Teen Hangout 2020

Beat your Coronavirus boredom! Join the… More
Mar 17, 2020 Hangouts

March FA Hangout 2020

The FARA Ambassador Program presents an… More
Mar 12, 2020 Meet the Community

Andressa Ayres Pelanda

Name: Andressa Ayres Pelanda Age: 35… More
Mar 06, 2020 Meet the Community

Isabella (Bella) Zenteno

Name: Isabella (Bella) Zenteno Age: 13… More
Mar 02, 2020 Meet the Community

Eduardo Venâncio

Name: Eduardo Venâncio Age: 36 Where do… More
Feb 24, 2020 Meet the Community

Sahithi Dingari

Name: Sahithi Dingari Age: 29 Where do… More
Feb 21, 2020 Hangouts

February Teen Hangout 2020

Join the FARA Ambassadors for a hangout… More
Feb 21, 2020 Hangouts

February FA Hangout 2020

In honor of Valentine's Day, let's talk… More
Feb 17, 2020 Meet the Community

Glenn ter Borg & Katia Gomes

Name: Glenn ter BorgAge: 47 (born… More
Feb 10, 2020 Meet the Community

Nadine Kleine

Name: Nadine Kleine Age: 23 Where do… More
Jan 24, 2020 Meet the Community

Lily Pierce

Name: Lily Pierce Age: 26 Where do you… More
Jan 20, 2020 Hangouts

January Teen Hangout 2020

Back for 2020!! We hope you can join… More
Jan 20, 2020 Meet the Community

Hasitha Illa

Name: Hasitha Illa Age: 23 Where do you… More
Jan 16, 2020 Hangouts

January Hangout 2020

Want to get more involved? Want to host… More
Jan 13, 2020 Meet the Community

Rishipal Singh Hura

Name Rishipal J Singh Hura Age 35 Where… More
Jan 06, 2020 Meet the Community

Nara Fernandes Lucio

Name: Nara Fernandes Lucio Age: 27… More
Dec 20, 2019 Meet the Community

Carla Izadora Cotrim

Name: Carla Izadora Cotrim Age: 24… More
Dec 13, 2019 Meet the Community

Brona Kearney

Name: Brona Kearney Age: 27 years old… More
Dec 10, 2019 Hangouts

December FA Hangout 2019

The new year is coming! Let's talk… More
Dec 06, 2019 Meet the Community

The Miller Family

Name: Jasmine Miller Age: 11 years old… More
Dec 02, 2019 Meet the Community

Leah Alstin

Name: Leah Alstin Age: 36 Where do you… More
Nov 22, 2019 Meet the Community

Monique Gutz

Name: Monique Gutz Age: 32 Where do you… More
Nov 15, 2019 Hangouts

November FA Hangout 2019

Winter is settling in so let's talk… More
Nov 13, 2019 Hangouts

November FA Teen Hangout 2019

Join the FARA Ambassadors for a hangout… More
Nov 13, 2019 Meet the Community

Ben Tyler

Name Ben Tyler Age 35 Where do you call… More
Oct 30, 2019 Meet the Community

Giovanna Moreschi

Name: Giovanna Moreschi. Age: I am 20… More
Oct 24, 2019 Meet the Community

Kay Krankel

Name: Kay Krankel Age: 83 Where do you… More
Oct 18, 2019 Hangouts

October FA Teen Hangout 2019

Join the FARA Ambassadors for a hangout… More
Oct 18, 2019 Meet the Community

Jordan Murphy

Name: Jordan Michael Patrick Murphy… More
Oct 08, 2019 Meet the Community

Megan Leeper

Name: Megan Leeper Age: 21 Where do you… More
Oct 07, 2019 Meet the Community

Lindsay Ashman

Name: Lindsay Ashman Age: I am 39 years… More
Sep 30, 2019 Meet the Community

Seth Holm

Name: Seth Holm Age: 25 Where do you… More
Sep 23, 2019 Ambassador Blog

September FA Teen Hangout 2019

Join the FARA Ambassadors for a hangout… More
Sep 23, 2019 Meet the Community

Neal Ramer

Name: Neal Ramer Age: 41 Where do you… More
Sep 19, 2019 Ambassador Blog

September FA Hangout 2019

The topic will be 'The coolest thing… More
Sep 17, 2019 Ambassador Blog

FA Adventure Day 2019

We just completed Spark Hope's eighth… More
Sep 12, 2019 Meet the Community

Emery Fitzhugh

Name: Emery Fitzhugh Age: 20 years old… More
Sep 09, 2019 Meet the Community

The Batta Family

Name: Ryanne Batta Age: 15 Where do you… More
Aug 30, 2019 Meet the Community

Erin Wooten

Name: Erin Wooten Age: 26 years old… More
Aug 20, 2019 Hangouts

August FA Teen Hangout 2019

Join the FARA Ambassadors for a hangout… More
Aug 20, 2019 Hangouts

August FA Hangout 2019

The topic will be 'Everyday… More
Aug 20, 2019 Meet the Community

Kim Ayres

Name: Kim Ayres Age: 49 Where do you… More
Aug 16, 2019 Meet the Community

Carrie Bolinger

Name Carrie Bolinger Age 38 Where do… More
Aug 08, 2019 Meet the Community

Barbie

Name: Barbie Age: 21 Where do you call… More
Aug 02, 2019 Meet the Community

Gracie Boudreaux

Name: Gracie Boudreaux Age: 17 Where do… More
Jul 30, 2019 Ambassador Blog

July FA Hangout 2019

This month's topic is, "What fun summer… More
Jul 26, 2019 Ambassador Blog

FAmily Friend Set to Climb Mt. Kilimanjaro and Raise Money for FA

Scott Osleeb and his best friend Rocio… More
Jul 25, 2019 Meet the Community

The Swaney's

Name Dawson Ryker Swaney Age 15 Where… More
Jul 19, 2019 Meet the Community

Damaris Eunice Seballes

Name: Damaris Eunice Seballes Age: 21… More
Jul 12, 2019 Meet the Community

Susan Allen Carter

Name: Susan Allen Carter Age: 45 Where… More
Jul 08, 2019 Meet the Community

John Day

Name: John Day Age: I am 50 years old.… More
Jul 01, 2019 Meet the Community

Marc Mailloux

Name: Marc Mailloux Age: 51 Where do… More
Jun 19, 2019 Hangouts

June FA Hangout 2019

This month's topic is, "What do you do… More
Jun 19, 2019 Meet the Community

Angelo Bonarrigo Jr.

Name: Angelo Bonarrigo Jr. Age: 49… More
Jun 18, 2019 Ambassador

Morgan Talevich

Hey guys! My name is Morgan Talevich… More
Jun 18, 2019 Ambassador

Kyle Waterman

Hi! My name is Kyle Waterman and I'm 21… More
Jun 17, 2019 Hangouts

Teen Hangout - June 2019

Join the FARA Ambassadors for a hangout… More
Jun 13, 2019 Meet the Community

Kelley White

Name: Kelley White Age: 44 Where do you… More
Jun 13, 2019 Ambassador

Chris Meyer

My name is Chris Meyer and was… More
Jun 12, 2019 Ambassador

Xhesika Peza

I am Xhesika Peza 24 years old… More
Jun 12, 2019 Ambassador

Kailey Newcity

Hi, my name is Kailey Newcity, I’m 31… More
Jun 11, 2019 Ambassador

Camila Primavesi

Hello, my name is Camila and I'm from… More
Jun 06, 2019 Meet the Community

Candace Honeycutt

Name: Candace Honeycutt Age: 43 Where… More
Jun 05, 2019 Ambassador Blog

FA Awareness Day Luau 2019

The FA Awareness Day Luau was a special… More
Jun 04, 2019 Ambassador

Carli Hook Hanson

Carli (Hook) Hanson, 36, from Michigan… More
Jun 04, 2019 Ambassador

Natache Iamaya

My name is Natache Iamaya, I'm… More
May 31, 2019 Meet the Community

Andrew Marshall

Name: Andrew Marshall Age: 37 Where do… More
May 30, 2019 Ambassador Blog

7th Annual Mother's Day 5K Race for Christina

The 7th Annual Mother's Day 5K Race for… More
May 30, 2019 Ambassador Blog

Cure FA Soirée: React with Music 2019

Thank you, Gehr family of Edmond, OK,… More
May 28, 2019 Ambassador

Madelyn Frederick

Hey, everyone, I'm Madelyn Frederick… More
May 28, 2019 Ambassador

Brendan Halverson

Hello! My name is Brendan Halverson, I… More
May 23, 2019 Meet the Community

Laura Rose Ferrarone

Name: Laura Rose Ferrarone Age: 29… More
May 20, 2019 Meet the Community

Kati Hook

Name: Kati Hook Age: 35 years old Where… More
May 17, 2019 Ambassador Blog

Teen Hangout - May 2019

Join the FARA Ambassadors for a hangout… More
Jul 24, 2020 Meet the Community

Osama Alawik

Name Osama Alawik Age 20 Where do you… More
May 15, 2019 Ambassador Blog

May FA Hangout 2019

This month's topic is, "What You're… More
May 14, 2019 Ambassador

Justin Bolinger

Greetings from the great state of… More
May 14, 2019 Ambassador

Carly Magnuson

Hi, I'm Carly Magnuson and I live in… More
May 13, 2019 Meet the Community

Rhea Hoffman

Name – Rhea Hoffman Age – 31 Where do… More
May 06, 2019 Meet the Community

Kaity Ratcliff

Name: Kaity Ratcliff Age: 17 Where do… More
May 03, 2019 Ambassador

Jakob Mitterhauser

Hey, my name is Jakob Mitterhauser. I… More
May 02, 2019 Ambassador

Mary Nadon Scott

My name is Mary Nadon Scott. I am… More
Apr 29, 2019 Meet the Community

Wes Gates

Name: Robert W. Gates (Wes) Age: 31… More
Apr 16, 2019 Hangouts

April FA Hangout 2019

This month's topic is, "The importance… More
Apr 15, 2019 Ambassador

Tricia Herman-Maul

My journey with Friedreich's Ataxia… More
Apr 12, 2019 Meet the Community

Marianne Hakim

Name: Marianne Hakim Age: 32 Where do… More
Apr 01, 2019 Meet the Community

Beth Hanes

Name Beth Hanes Age 38 Where do you… More
Mar 25, 2019 Hangouts

Teen Hangout - March 2019

Join the FARA Ambassadors for a hangout… More
Mar 22, 2019 Meet the Community

Dawn Sellers

Name: Dawn Sellers Age: 38 Where do you… More
Mar 15, 2019 Meet the Community

Cindy Deatherage

Name Cindy Deatherage Age 56 Where do… More
Mar 08, 2019 Meet the Community

Fiona Lamond

Name: Fiona Lamond (Fi) Age: 33 (May… More
Feb 27, 2019 Ambassador

Kyle Bryant

Kyle Bryant is the founder and director… More
Feb 22, 2019 Meet the Community

Nick Lee

Name: Nick Lee Age: 28 (born in 1990)… More
Feb 18, 2019 Hangouts

Teen Hangout - February 2019

Join the FARA Ambassadors for a hangout… More
Feb 15, 2019 Meet the Community

Nicole Kramer

Name: Nicole Kramer Age: 24 Where do… More
Feb 15, 2019 Hangouts

February FA Hangout 2019

This month's hangout topic is "What Do… More
Feb 07, 2019 Meet the Community

Lesley Eertink

Name Lesley Eertink. Age: I am 32, but… More
Jan 31, 2019 Meet the Community

Geoffrey J Fox

Name: Geoffrey J Fox Age: 39 years old… More
Jan 25, 2019 Meet the Community

Andrew (Andy) Sorter

Name: Andrew (Andy) Sorter Age: 25… More
Jan 25, 2019 Hangouts

Teen Hangout - January 2019

Join the FARA Ambassadors for a hangout… More
Jan 18, 2019 Hangouts

January FA Hangout 2019

Brittany Sommerfield and Noelle… More
Jan 18, 2019 Meet the Community

The Venter's

Name Chene Venter Age 19 Where do you… More
Jan 15, 2019 Ambassador

Brittany Sommerfield

Hello, my name is Brittany Sommerfield… More
Jan 11, 2019 Meet the Community

Barry Risinger

Name: Barry Risinger jr Age: 37 Where… More
Dec 10, 2018 Meet the Community

The Dürr Family

Name: Leila Dürr Age: 14 Where do you… More
Dec 10, 2018 Hangouts

December FA Hangout 2018

This month's hangout will be led by… More
Dec 05, 2018 Meet the Community

Frank Sullivan

Name: Francis (Frank) Sullivan Age: 69… More
Dec 03, 2018 Meet the Community

Christina Cordaro and Catherine Logan

Name: Christina Cordaro Age: 28 Where… More
Nov 26, 2018 Meet the Community

Alison Love

Name: Alison Love Age: 46 years Where… More
Nov 26, 2018 Hangouts

Teen Hangout - November 2018

Join the FARA Ambassadors for a hangout… More
Nov 19, 2018 Hangouts

November FA Hangout 2018

RJ Mercure and Allie Bouchard are going… More
Nov 16, 2018 Meet the Community

Michelle Huebner Bodine

Name: Michelle Huebner Bodine Age: 40… More
Nov 14, 2018 Ambassador Blog

Patient Perspective: Brittany's Experience Participating in Research Studies

Hello, my name is Brittany Sommerfield… More
Nov 09, 2018 Meet the Community

Annika Venter

Name: Annika Venter Age: 18 Where do… More
Nov 06, 2018 Ambassador Blog

Advocacy - Our Voices Roar When Joined with Others

FARA is fortunate to join many umbrella… More
Nov 02, 2018 Meet the Community

Kailey Newcity

Name: Kailey Newcity Age: 27 Where do… More
Oct 31, 2018 Ambassador Blog

Family Weekend in Philly

It all started on the morning of… More
Oct 26, 2018 Meet the Community

Jade Brim

Name Jade Brim Age 28 Where do you call… More
Oct 22, 2018 Hangouts

Teen Hangout - October 2018

Join the FARA Ambassadors for a hangout… More
Oct 18, 2018 Meet the Community

Madelyn Frederick - MTC

Name Madelyn Frederick Age 19 Where do… More
Oct 11, 2018 Meet the Community

Kolby Draper

Name: Kolby Draper Age: 23 Where do you… More
Oct 05, 2018 Meet the Community

Marion Brossier

Name: Marion Brossier Age: 24 Where do… More
Sep 27, 2018 Meet the Community

Alison Avery

Name: Alison Avery Age: I am 24 Where… More
Sep 21, 2018 Meet the Community

Naomi Houghton

Name Naomi Houghton Age 24 Where do you… More
Sep 20, 2018 Hangouts

FA Hangout September 2018

The FARA Ambassador Program presents an… More
Sep 18, 2018 Hangouts

Teen Hangouts - September 2018

Join the FARA Ambassadors for a hangout… More
Sep 13, 2018 Meet the Community

Colton Watson and Family

Name: Colton Watson Age:10 Where do you… More
Sep 07, 2018 Meet the Community

Kyle Waterman

Name: Kyle Waterman Age: 20 Where do… More
Aug 22, 2018 Hangouts

August FA Teen Hangout

Join the FARA Ambassadors for a hangout… More
Aug 20, 2018 Ambassador Blog

Patient Perspective: Jean Walsh's Decision to Participate in TAK-831

I like to participate in clinical… More
Aug 16, 2018 Meet the Community

Michael Pelletier

Name: Michael S Pelletier Age: 57 Where… More
Aug 14, 2018 Hangouts

August FA Hangout 2018

The August hang out will be led by Jake… More
Aug 09, 2018 Meet the Community

Johnna Wheeler

Name: Johnna Wheeler Age: 30 Where do… More
Aug 03, 2018 Meet the Community

Gabe Ford

Name: Gabrielle "Gabe" Ford Age: I am… More
Aug 02, 2018 Ambassador

Scarlett Drews

My name is Scarlett. I'm 22 years old… More
Aug 02, 2018 Meet the Community

Alex Bode

Hey everyone, my name is Alex Bode and… More
Aug 02, 2018 Ambassador

Shandra Trantham

Hi! My name is Shandra Trantham. I am… More
Aug 02, 2018 Ambassador

Gabrielle Angioelli

My name is Gabrielle Angiolelli, I am… More
Aug 02, 2018 Ambassador

Allison Dana

Name: Allison Dana Age: 39 Where do you… More
Jul 27, 2018 Meet the Community

Priscilla Weatherford

Name: Priscilla Weatherford Age: 34… More
Jul 23, 2018 Ambassador Blog

Young Adult Representatives of RDLA Event

On Saturday, July 14, 2018, I went to… More
Jul 23, 2018 Meet the Community

The Walker Family

Name: Kate Walker Age: 15 Where do you… More
Jul 18, 2018 Ambassador Blog

Lenny and Joe's Carousel

Hiring a good PCA is a hard thing to… More
Jul 17, 2018 Hangouts

FA Hangout July 2018

What opportunities has FA opened up for… More
Jul 17, 2018 Hangouts

FA Teen Hangout July 2018

Join the FARA Ambassadors for a hangout… More
Jul 16, 2018 Meet the Community

Gavin Oldaker

Name: Gavin Oldaker Age: 29 Where do… More
Jul 10, 2018 Ambassador Blog

Patient Perspective: Antonio's Experience Participating in a Clinical Trial

My name is Antonio Calmon. I am 41… More
Jul 06, 2018 Meet the Community

Denise Lenhart

Name: Denise Lenhart Age: 43 Where do… More
Jun 27, 2018 Meet the Community

Carolin Benesch (Caro)

Name: Carolin Benesch (Caro) Age: 27… More
Jun 22, 2018 Meet the Community

Robert Rhodes

Name: Robert Rhodes Age: 34 Where do… More
Jun 18, 2018 Hangouts

FA Teen Hangout June 2018

Join the FARA Ambassadors for a hangout… More
Jun 18, 2018 Hangouts

FA Hangout June 2018

This month's hangout will be led by RJ… More
Jun 14, 2018 Meet the Community

Yasin Rehmanji

Name: Yasin Rehmanji Age: Turning 15… More
Jun 08, 2018 Meet the Community

Danny Rieffenberger

Name: Danny Rieffenberger Age: 33 Where… More
Jun 04, 2018 Ambassador Blog

Brittany Sommerfield - My Solo Wheelchair Journey

Hello, my name is Brittany Sommerfield.… More
May 25, 2018 Meet the Community

Anthony Monaco

Name: Anthony Monaco Age: 28 Where do… More
May 22, 2018 Hangouts

Teen Hangouts - May 2018

Join the FARA Ambassadors for a hangout… More
May 15, 2018 Meet the Community

Carly Magnuson

Name: Carly Magnuson Age: 27 Where do… More
May 22, 2018 Hangouts

FA Hangouts May 2018

Hey, Hangouts participants! We have an… More
May 13, 2018 Meet the Community

David Willis

Name: David Willis Age: 41 Where do you… More
May 04, 2018 Meet the Community

Elizabeth Bowen

Name: Elizabeth Bowen Age: 34 Where do… More
Apr 27, 2018 Meet the Community

The Miller Family

Name: Sean and Ryan Miller Age: Sean… More
Apr 22, 2018 Hangouts

FA Hangouts - April 2018

The FARA Ambassador Program presents an… More
Apr 17, 2018 Hangouts

Teen Hangouts - April 2018

Join the FARA Ambassadors for a Google… More
Apr 23, 2018 Meet the Community

Beverlee Blackston

Name: Beverlee Blackston Age: 30 Where… More
Apr 12, 2018 Ambassador Blog

Rare Disease Week 2018

FARA Staff and Ambassadors had a… More
Apr 16, 2018 Meet the Community

MTC - Xhesika Peza

Name: Xhesika Peza Age: 22 Where do you… More
Apr 04, 2018 Meet the Community

Corey Pemberton

Name: Corey Pemberton Age: 32 Where do… More
Apr 03, 2018 Meet the Community

Aimee Clifford

Name: Aimee Clifford Age: 29 Where do… More
Mar 26, 2018 Ambassador Blog

Patient Perspective: Christina's Experience Participating in a Clinical Trial

My name is Christina Logan. I am 27… More
Mar 26, 2018 Meet the Community

Brittany Waters

Name: Brittany Waters Age: 30 Where do… More
Mar 13, 2018 Meet the Community

Becky Taylor

Name: Becky Taylor Age: 42 Where do you… More
Mar 12, 2018 Meet the Community

Kim Swiatek

Name: Kim Swiatek Age: 51 Where do you… More
Mar 11, 2018 Hangouts

Teen Hangouts - March 2018

Join the FARA Ambassadors for a Google… More
Mar 11, 2018 Hangouts

FA Hangouts - March 2018

The FARA Ambassador Program presents an… More
Mar 11, 2018 Ambassador Blog

Patient Perspective: Kyle's Experience Participating in a Clinical Study

Clinical Study Review: Metabolism in… More
Feb 19, 2018 Meet the Community

Marinda Cauley

Name: Marinda Cauley Age: 25 Where do… More
Feb 16, 2018 Ambassador Blog

Patient Perspective: Stephanie's Experience Participating in a Research Study

Participating in research for… More
Feb 12, 2018 Ambassador Blog

Patient Perspective: Shandra's Experience Participating in a Clinical Study

Hi! My name is Shandra Trantham and I… More
Feb 12, 2018 Meet the Community

Marissa Graczyk

Name: Marissa Graczyk Age: 13 Where do… More
Feb 12, 2018 Hangouts

Teen Hangouts - February 2018

Join the FARA Ambassadors for a Google… More
Feb 05, 2018 Meet the Community

Alex Merriam

Name: Alex Merriam Age: 41 Where do you… More
Jan 30, 2018 Meet the Community

Mindaugas Tiscenka

Name: Mindaugas TiscenkaAge: 28Where do… More
Jan 22, 2018 Meet the Community

Adam Griffies

Name: Adam Griffies Age: 23 Where do… More
Jan 22, 2018 Meet the Community

Allie Kittel

Name: Allie Kittel Age: 25 Where do you… More
Jan 18, 2018 Hangouts

FA Hangouts - January 2018

The FARA Ambassador Program presents an… More
Jan 14, 2018 Hangouts

Teen Hangouts - January 2018

The FARA Ambassador Program is excited… More
Jan 09, 2018 Meet the Community

Megan McIntyre

Name: Megan McIntyre Age: 35 Where do… More
Dec 22, 2017 Hangouts

FA Hangouts - December 2017

The FARA Ambassador Program presents an… More
Dec 20, 2017 Meet the Community

Jude Lally

Name: Jude Lally Age: 35 Where do you… More
Dec 19, 2017 Meet the Community

Rachel Manring

Name: Rachel Manring Age: 25 Where do… More
Dec 10, 2017 Hangouts

Teen Hangouts - December 2017

The FARA Ambassador Program is excited… More
Dec 03, 2017 Meet the Community

Anna Morrow

Name: Anna Morrow Age: 11 Where do you… More
Nov 27, 2017 Meet the Community

Amy LaPorte

Name: Amy LaPorte Age: 38 Where do you… More
Nov 19, 2017 Meet the Community

Megan Rush

Name: Megan Rush Age: 33 Where do you… More
Nov 13, 2017 Hangouts

FA Hangouts - November 2017

The FARA Ambassador Program presents an… More
Nov 13, 2017 Meet the Community

Sam Bode

Name: Sam Bode Age: 31 Where do you… More
Nov 13, 2017 Meet the Community

Chelsey Sommerfield

Name: Chelsey Sommerfield Age: 27 Where… More
Nov 01, 2017 Meet the Community

Yesenia Ramos

Name: Yesenia Ramos Age: 20 Where do… More
Oct 23, 2017 Meet the Community

Adam Kiess

Name: Adam Kiess Age: 38 Where do you… More
Oct 23, 2017 Hangouts

FA Hangouts - October 2017

The FARA Ambassador Program presents an… More
Oct 12, 2017 Meet the Community

Clifton Raspberry

Name: Clifton Raspberry Age: 35 Where… More
Oct 11, 2017 Ambassador Blog

Celebrating the Joy of Happiness

Each year for almost ten years my… More
Oct 10, 2017 Meet the Community

Jakob Mitterhauser

Name: Jakob Mitterhauser Age: 24 Where… More
Oct 02, 2017 Meet the Community

Grace Smith

Name: Grace Smith Age: 10 years old… More
Sep 20, 2017 Hangouts

FA Hangouts - September 2017

The FARA Ambassador Program presents an… More
Sep 14, 2017 Ambassador Blog

Remembering Paige Myers, FARA Ambassador

On Friday, September 1, 2017, my good… More
Sep 14, 2017 Hangouts

Teen Hangouts: Presented by the FARA Ambassador Program

The FARA Ambassador Program is excited… More
Sep 14, 2017 Ambassador

Vlad Ayriyan

Hello, my name is Vladimir Ayriyan, I’m… More
Aug 24, 2017 Hangouts

FA Hangouts - August 2017

The FARA Ambassador Program presents an… More
Aug 08, 2017 Ambassador

Jacob Ferguson

My name is Jacob Ferguson. I am 22… More
Aug 01, 2017 Ambassador

Matt Lafleur

Name: Matthew Lafleur Age: 31 Where do… More
Jul 20, 2017 Hangouts

FA Hangouts - July 2017

The FARA Ambassador Program presents an… More
Jul 11, 2017 Ambassador

Nygel Lenz

My name is Nygel Lenz, and I am 41. I… More
Jul 11, 2017 Meet the Community

Troy Leslie

My name is Troy Leslie I am from Perth,… More
Jul 10, 2017 Ambassador

Sam Bridgman

After being diagnosed with FA at the… More
Jun 20, 2017 Hangouts

FA Hangouts - June 2017

The FARA Ambassador Program presents an… More
Apr 19, 2017 Hangouts

FA Hangouts - April 2017

The FARA Ambassador Program presents an… More
Apr 06, 2017 Ambassador Blog

Ambassador Program Applications 2017

FARA Ambassadors are FA patient… More
Mar 19, 2017 Hangouts

FA Hangouts - March 2017

The FARA Ambassador Program presents an… More
Mar 16, 2017 Ambassador Blog

Patient Perspective: Leah's Experience Participating in a Research Study

It was 2001. I had just finished year… More
Mar 13, 2017 Ambassador Blog

Visiting FARA Funded Researchers

Katie Schultz joined the FARA team, as… More
Feb 16, 2017 Ambassador Blog

Patient Perspective: Frankie's Experience Participating in a Clinical Trial

Hello! My name is Frankie Perazzola, 24… More
Feb 16, 2017 Hangouts

FA Hangouts - February 2017

The FARA Ambassador Program presents an… More
Feb 09, 2017 Ambassador Blog

Patient Perspective: Michael's Experience Participating in a Clinical Trial

On January 19, 2016, I was diagnosed… More
Feb 03, 2017 Ambassador Blog

A Mom's Perspective on Participating in Clinical Research

Six months ago, our 10-year-old son… More
Feb 02, 2017 Ambassador Blog

Patient Perspective: Jake's Experience Participating in Clinical Research Studies

Hi! My name is Jake and I want to tell… More
Jan 18, 2017 Hangouts

FA Hangouts - January 2017

The FARA Ambassador Program presents an… More
Dec 15, 2016 Hangouts

FA Hangouts - December 2016

The FARA Ambassador Program presents an… More
Nov 21, 2016 Ambassador Blog

Bracelets to #cureFA!

My original inspiration for making… More
Nov 15, 2016 Ambassador Blog

ADVOCACY ALERT: United Rare Disease Day of Action for #CuresNOW

Dear friends of the FA Community, The… More
Nov 08, 2016 Hangouts

FA Hangouts - November 2016

The FARA Ambassador Program presents an… More
Nov 02, 2016 Ambassador Blog

A Time to Connect, Share, Learn and HOPE

The Bidichandani research lab, located… More
Oct 19, 2016 Hangouts

FA Hangouts - October 2016

The FARA Ambassador Program presents an… More
Sep 20, 2016 Hangouts

FA Hangouts - September 2016

The FARA Ambassador Program presents an… More
Aug 17, 2016 Hangouts

FA Hangouts - August 2016

The FARA Ambassador Program presents an… More
Jul 25, 2016 Meet the Community

Holly Franz

Name: Holly Franz Age: 22 Where do you… More
Jul 18, 2016 Hangouts

FA Hangouts - July 2016

The FARA Ambassador Program presents an… More
Jul 06, 2016 Ambassador Blog

Research Labs and Hope in North Carolina

At the beginning of June, I was invited… More
Jun 20, 2016 Meet the Community

Jake Hayner

Name: Jake Hayner Age: 34 Where do you… More
Jun 15, 2016 Hangouts

FA Hangouts - June 2016

The FARA Ambassador Program presents an… More
Jun 14, 2016 Meet the Community

Chrissy Thomas

Name: Chrissy Thomas Age: 30 Where do… More
May 30, 2016 Meet the Community

Laura Bishop

Name: Laura Bishop Age: 23 years old… More
Jun 05, 2016 Meet the Community

Carla Poletti

Name: Carla Poletti Age: I am 48 years… More
May 24, 2016 Meet the Community

Eric Bermudez

Name: Eric Bermudez Age: I'm 52 years… More
May 12, 2016 Hangouts

FA Hangouts - May 2016

The FARA Ambassador Program presents an… More
Apr 16, 2016 Hangouts

FA Hangouts - April 2016

The FARA Ambassador Program presents an… More
Apr 07, 2016 Ambassador Blog

Bringing It Home

On March 11th, friends and family of… More
Apr 06, 2016 Ambassador Blog

Patient Perspective: Sean's Experience Participating in a Clinical Research Study

Everyone has a part they can play, a… More
Apr 05, 2016 Ambassador Blog

Drug Access and Supplements

The below article is Part Four of a… More
Apr 04, 2016 Ambassador Blog

Ambassador Program Applications 2016

FARA Ambassadors are FA patient… More
Mar 23, 2016 Ambassador Blog

Patient Perspective: Alex's Experience Participating in a Clinical Research Study

I’ll admit, I was a bit nervous… More
Mar 18, 2016 Ambassador Blog

Patient Perspective: Jamie & Jean's Experience Participating in the Natural History Study

I have been participating in the… More
Mar 17, 2016 Hangouts

FA Hangouts - March 2016

The FARA Ambassador Program presents an… More
Mar 09, 2016 Ambassador Blog

Drug Approvals and What Happens Next

The below article is Part Three of a… More
Mar 09, 2016 Ambassador Blog

Patient Perspective: Kyle's Reflection on the Importance of Being an Active Participant in Research

After the stressful early morning drive… More
Mar 03, 2016 Ambassador Blog

Patient Perspective: Mandy's Experience Participating in a Research Study

Last summer, I was approved eligible to… More
Feb 24, 2016 Ambassador Blog

Patient Perspective: Tricia's Experience Participating in a Research Study

Hi, my name is Tricia. I was diagnosed… More
Feb 17, 2016 Hangouts

FA Hangouts - February 2016

The FARA Ambassador Program presents an… More
Feb 17, 2016 Ambassador Blog

Patient Perspective: Liam's Experience Participating in a Research Study

What does progression mean? What does… More
Feb 15, 2016 Meet the Community

Keith OBrien

Name: Keith OBrien Age: 17 Where do you… More
Feb 10, 2016 Ambassador Blog

Patient Perspective: Mary's Experience Participating in a Research Study

Hi, my name is Mary. I am 34 and live… More
Feb 08, 2016 Meet the Community

Carlos Orozco

Name: Carlos Orozco Age: 21 Where do… More
Feb 03, 2016 Ambassador Blog

Patient Perspective: Abby & Chase's Experience in a Research Study

I recently had the opportunity to… More
Jan 31, 2016 Meet the Community

Meg Larson

Name: Meg Larson Age: 21 Where do you… More
Jan 26, 2016 Ambassador Blog

Accelerating Drug Development and Clinical Trials

The below article is Part Two of a… More
Jan 25, 2016 Meet the Community

Don Royer

Name: Don Royer Age: 36 Where do you… More
Jan 18, 2016 Hangouts

FA Hangouts - January 2016

The FARA Ambassador Program presents an… More
Jan 04, 2016 Ambassador Blog

The Drug Development Pathway

The below article was originally… More
Jan 04, 2016 Ambassador

Noelle Bouchard

Name: Noelle Bouchard Age: 28 Where do… More
Dec 28, 2015 Meet the Community

Jonathan Zilles

Name: Jonathan Zilles Age: 37 on… More
Dec 15, 2015 Meet the Community

Molly Lawson

Name: Molly Lawson Age: 19 Where do you… More
Dec 14, 2015 Hangouts

FA Hangouts - December 2015

The FARA Ambassador Program presents an… More
Nov 30, 2015 Meet the Community

Tiffany Rose Gambill

Name: Hi, I’m Tiffany Rose Gambill.… More
Nov 23, 2015 Meet the Community

Linda Johnson

Name: Linda Johnson Age: 53 Where do… More
Nov 09, 2015 Hangouts

FA Hangouts November 2015

The FARA Ambassador Program presents an… More
Nov 09, 2015 Meet the Community

Rachel Conger

Name: Rachel Conger Age: 19 Where do… More
Nov 09, 2015 Meet the Community

Dillon Head

Name: Dillon M. Head Age: 19 almost 20… More
Oct 19, 2015 Hangouts

FA Hangouts October 2015

The FARA Ambassador Program presents a… More
Oct 19, 2015 Meet the Community

Erin Kiernan

Name: Erin Kiernan Age: 26 Where do you… More
Oct 04, 2015 Meet the Community

Billie Wells

Name: Billie Wells (JoJo) Age: 26 Where… More
Sep 20, 2015 Meet the Community

Laura Beth Jacquin

Name: Laura Beth Jacquin Age: 28 Where… More
Sep 15, 2015 Hangouts

FA Hangouts 9

The FARA Ambassador Program presents an… More
Sep 28, 2015 Meet the Community

Jack DeWitt

Name: Jack N. DeWitt Age: 15 Where do… More
Sep 14, 2015 Meet the Community

Evan Luebbe

Name: Evan Luebbe Age: 19 Where do you… More
Sep 04, 2015 Ambassador Blog

Ambassador Review: Pipeline Progress and Clinical Trials

Advocate Reaction: Thinking Out Loud My… More
Sep 04, 2015 Meet the Community

Bridget Downing

Name: Bridget downing Age: 29 Where do… More
Aug 24, 2015 Meet the Community

Brian Bianchi

Name: Brian Bianchi Age: 21 Where do… More
Aug 21, 2015 Meet the Community

Asad Rafi

Name: Asad Rafi Age: 45 Where do you… More
Aug 20, 2015 Ambassador Blog

How to Breathe at 12,000 Feet

This article was originally published… More
Aug 13, 2015 Meet the Community

Alyx Holliday

Hello everyone, my name is Alyx… More
Aug 13, 2015 Hangouts

FA Hangouts 8

The FARA Ambassador Program presents an… More
Aug 09, 2015 Meet the Community

Alena and Alisa Wolfson

Name: Alena Wolfson Age: 18 years old… More
Aug 03, 2015 Meet the Community

Erin Pieper

Name: Erin Pieper Age: 27 Where do you… More
Jul 28, 2015 Ambassador Blog

The Big Study in the Big Apple

As a Friedreich’s Ataxia (FA) patient,… More
Jul 27, 2015 Meet the Community

Conal Alexander

Name: Conal Alexander Age: 35 Where do… More
Jul 20, 2015 Ambassador Blog

Research Spotlight: Bidichandani Lab

On July 9, FARA Ambassadors Christin… More
Jul 21, 2015 Ambassador Blog

A Whole Lotta Love for FA Hangouts

We think the FA Google Hangouts that… More
Jul 14, 2015 Ambassador Blog

Sean Mazeres

Hi, my name is Sean Mazeres. I am 23… More
Jul 13, 2015 Ambassador

Mary Bircher

I’m 29 and was diagnosed with FA when I… More
Jul 13, 2015 Ambassador

Mandy Davis

One of my favorite quotes, “In three… More
Jul 13, 2015 Hangouts

FA Hangouts 7

The FARA Ambassador Program presents… More
Jul 13, 2015 Ambassador Blog

Kendall Harvey

“Que sera sera, whatever will be, will… More
Jul 13, 2015 Ambassador Blog

Joseph Mullaney

Hello everyone, my name is Joseph… More
Jul 06, 2015 Ambassador

Jacob Tompkins

This Meet the Community interview was… More
Jun 23, 2015 Meet the Community

Dave Arnold

“You cannot change the cards you are… More
Jun 23, 2015 Ambassador

Casey Kasselder

My name is Casey Kasselder; I am 25… More
Jun 23, 2015 Ambassador

Alex Fielding

I am a native New-Englander – born,… More
Jun 23, 2015 Ambassador Blog

Abby Y

My name is Abby. I am 19 years old… More
Jun 22, 2015 Ambassador Blog

A Look Behind the Scenes

As a part of being a FARA Ambassador on… More
Jun 22, 2015 Hangouts

FA Hangouts 6

The FARA Ambassador Program presents… More
Jun 18, 2015 Meet the Community

Crystal

Name: Crystal Age: 36 Where do you call… More
May 20, 2015 Ambassador Blog

Spotlight on Iain Fryatt

I stumbled across Iain on Twitter. His… More
May 18, 2015 Meet the Community

Stephanie Kilgore

Name: Stephanie Kilgore Age: 40 Where… More
May 11, 2015 Meet the Community

Manoj Dahal

Name: Manoj Dahal Age: 36 Where do you… More
May 04, 2015 Meet the Community

Chelsea Chamberlain

Name: Chelsea Chamberlain Age: 31 Where… More
Apr 27, 2015 Meet the Community

Natalie Denny

Name: Natalie Nadine Denny Age: 35… More
Apr 20, 2015 Meet the Community

Sarah Skelton

Name: Sarah J Skelton Age: 37 Where do… More
Apr 13, 2015 Meet the Community

Mary Nadon Scott

Name: Mary Nadon Scott Age: 33 Where do… More
Apr 06, 2015 Meet the Community

Clint Stewart

Name: Clint Stewart Age:31 Where do you… More
Mar 31, 2015 Ambassador Blog

Remembering FARA Director Nick Johnson

Nicholas A. Johnson October 19, 1963 -… More
Mar 30, 2015 Meet the Community

Joe Tyler

Name: Joe Tyler Age: 33 Where do you… More
Mar 27, 2015 Ambassador Blog

Spotlight on Natache Iamaya

FARA's main asset in the journey toward… More
Mar 25, 2015 Ambassador Blog

Research Spotlight: Dr. Marek Napierala

A Lab Devoted to Friedreich’s Ataxia… More
Mar 23, 2015 Ambassador Blog

Pull for a Cure

This year's Valentine's Day had a… More
Mar 20, 2015 Hangouts

FA Hangouts 4.0

Have FA? Like or want to travel? Join… More
Mar 20, 2015 Meet the Community

Donovan Simpson

Name: Donovan Simpson Age: 18 Where do… More
Feb 22, 2015 Hangouts

FA Hangouts

Come join us for FA hangouts! Once a… More
Feb 20, 2015 Ambassador Blog

FARA Family Fun Day Fundraiser on the Farm

January 17th, 2015 was a truly amazing… More
Feb 16, 2015 Meet the Community

Allison Dana

Name: Allison Dana Age: 35 Where do you… More
Jan 23, 2015 Ambassador Blog

MTC Gratitude

We have learned about many FA community… More
Jan 21, 2015 Hangouts

FA Hangouts 2.0

Greetings, We had three successful FA… More
Jul 13, 2015 Ambassador Blog

Wenses Reyes

This Meet the Community interview was… More
Jan 05, 2015 Meet the Community

Alex Fielding

Name: Alex Fielding Age: 26 Where do… More
Dec 21, 2014 Meet the Community

Janesh Wadhwa

Name: Janesh Wadhwa Age: 22 Where do… More
Dec 19, 2014 Ambassador Blog

FARA Newsletter

From the Executive Director Advancing… More
Dec 16, 2014 Ambassador Blog

The FARA Ambassador Program presents FA Hangouts

As we know, FA presents many unique… More
Dec 15, 2014 Ambassador Blog

Ap Gravatar

Dec 15, 2014 Meet the Community

Luke and Sandy

Name: Luke Cooper Age: 12 Where do you… More
Dec 08, 2014 Meet the Community

Ryelee and Mindy

Name: Ryelee Victoria Burris Age: 8… More
Dec 01, 2014 Meet the Community

Alyx Holliday

Name: Alyx Holliday Age: 18 Where do… More
Nov 19, 2014 Meet the Community

Brooke Ziegler

Name: Brooke Ziegler Age: 26 Where do… More
Jan 15, 2015 Ambassador Blog

Happy New Year 2015!

2014 In Review 2014 was a fantastic… More
Dec 28, 2014 Meet the Community

Danny Tanchez

Name: Daniel Tanchez (but really I… More
Nov 20, 2014 Ambassador Blog

Spotlight on Gunnhild (Andreassen) Lystad

A Norwegian Physiotherapist with FA “I… More
Nov 24, 2014 Meet the Community

Hannah Barnhill

Name: Hannah Barnhill Age: 19 Where do… More
Nov 10, 2014 Meet the Community

Drake and Trisha

Name: Drake (aka bub) Age: 8 years old… More
Oct 27, 2014 Meet the Community

Brittany Wiseman

Name: Brittany Wiseman Age: 25 Where do… More
Oct 19, 2014 Meet the Community

John Ryan

Name: John Ryan Age: 26 Where do you… More
Sep 21, 2014 Meet the Community

Emily and Andrea

Name: Emily Therens Age: 14 Where do… More
Sep 14, 2014 Meet the Community

Ashley Dodson

Name: Ashley Dodson Age: 30 Where do… More
Sep 07, 2014 Meet the Community

Jason and Alex Dagley

Name: Jason Dagley Age: 29 Where do you… More
Sep 01, 2014 Meet the Community

Sam Brown

Name: Sam Brown Age: 14 Where do you… More
Sep 18, 2014 Ambassador Blog

Spotlight on Patrick Cogan

Born and raised in Lynn, Massachusetts,… More
Oct 01, 2014 Ambassador Blog

Jack's Weapons of Grass Destruction Tour

My family recently held our first golf… More
Aug 24, 2014 Meet the Community

Preston Lynch

Preston (in the driver's seat) and his… More
Aug 13, 2014 Ambassador Blog

Ambassador Program Commitment Description

Aug 10, 2014 Meet the Community

Matthew Di Iorio

Name: Matthew J. Di Iorio Age: 33 Where… More
Jul 27, 2014 Meet the Community

Hannah and Austin Stacks

Name: Hannah and Austin Stacks Age: 11… More
Aug 18, 2014 Meet the Community

Raena

Name: Raena Age: 13 Where do you call… More
Aug 04, 2014 Meet the Community

D. Elizabeth Haubert

Name: D. Elizabeth Haubert Age: 31… More
Jul 21, 2014 Meet the Community

Pam Shortt

Name: Pam Shortt Age: 35 Where do you… More
Jul 14, 2014 Meet the Community

Abby Y

Name: Abby Y Age: 19 Where do you call… More
Jul 24, 2014 Ambassador Blog

Spotlight on Kiela Acker-Williams

Strength & Determination Kiela… More
Jul 07, 2014 Meet the Community

Jason Drake

Name: Jason Drake Age: 26 Where do you… More
Jul 01, 2014 Ambassador Blog

Lonestar Benefit Bash Golf Tournement

Hero- a person who is admired or… More
Jun 30, 2014 Meet the Community

Christin Haun

Name: Christin Haun Age: 43 Where do… More
Jun 23, 2014 Ambassador Blog

Beth Bax

I am a wife, a mother, a good friend.… More
Jun 19, 2014 Ambassador Blog

Spotlight on Barry Rice, Founder of Cycle Ataxia

'Luck' of the Irish Barry Rice has had… More
Jun 16, 2014 Ambassador Blog

Sean Baumstark

My name is Sean and I live in… More
Jun 09, 2014 Ambassador Blog

Megan

Hi Everyone! My name is Megan. I am 29… More
Jun 05, 2014 Ambassador Blog

HOPE

Hope. Hope is a small, four letter word… More
Jun 04, 2014 Ambassador Blog

The FARA Ambassador Program

The FARA Ambassadors is a united team… More
Mar 27, 2014 Ambassador Blog

Ambassador Program Projects

The defining purpose of each of the… More
Nov 05, 2013 Ambassador Blog

Ambassadors LT

Mission Statement: The FARA Ambassadors… More
Nov 03, 2013 Ambassador Blog

Jeannie Kinney

To all to all of you wonderful people,… More
Oct 28, 2013 Ambassador Blog

Christina Logan

Hello! My name is Christina Logan! I am… More
Oct 25, 2013 Ambassador Blog

RA Philly & CHOP Symposium

Five Ambassadors share about one great… More
Oct 14, 2013 Ambassador Blog

Catherine Brent

My name is Catherine Brent. I am 28… More
Sep 28, 2013 Ambassador Blog

We Care About Rare

On September 20th and 21st, I had the… More
Oct 07, 2013 Ambassador

Lealan LaRoche Sims

Lealan, In My Words By Katie Weir I… More
Oct 03, 2013 Ambassador Blog

Diversity Among Wheelchair Users

Society's Profound Need to Recognize… More
Sep 23, 2013 Ambassador Blog

Emily Penn

I was running track my freshman year of… More
Sep 30, 2013 Ambassador

Jamie Plourde

Jamie with best friend & fellow… More
Sep 19, 2013 Ambassador Blog

2013 FARA Energy Ball

The 2013 FARA Energy Ball is three days… More
Sep 16, 2013 Ambassador Blog

Lauren Williams

I was diagnosed with FA around the age… More
Sep 05, 2013 Ambassador Blog

30 Years and still Fighting

50, FA, still going strong. I am fifty.… More
Sep 03, 2013 Ambassador Blog

Mary Vida

Born and raised in New Jersey, I… More
Aug 29, 2013 Ambassador Blog

A Milestone Ride

In the beginning of 2013, a few of my… More
Aug 26, 2013 Ambassador Blog

The Face of Strength

The Ambassador group is thinking of our… More
Aug 22, 2013 Ambassador Blog

Arts & Creativity

So the topic of the day is how do I use… More
Aug 16, 2013 Ambassador Blog

Opportunities for Understanding

Here is the story of how I told family,… More
Aug 13, 2013 Ambassador Blog

Research funding is a precious resource

Last week FARA was notified of an… More
Aug 10, 2013 Ambassador Blog

Methodically Falling Prey

Dear readers, My first poem was one I… More
Aug 05, 2013 Ambassador Blog

Richie Currier

My name is Richard Currier (Richie), I… More
Aug 01, 2013 Ambassador Blog

The Blackburn Challenge

We did it! Our friend Tim and I paddled… More
Jul 25, 2013 Ambassador Blog

Telling Friends and Family about FA

So how do you tell friends, family, and… More
Jul 18, 2013 Ambassador Blog

World of Beer Fundraiser

Held at World of Beer in Arlington, VA… More
Jul 15, 2013 Ambassador Blog

John

I live by myself on the 14th floor in a… More
Jul 10, 2013 Ambassador Blog

The Maryland Youth Leadership Forum

The Maryland Youth Leadership Forum… More
Jul 08, 2013 Ambassador

Erin O'Neil

FA is rare. One has a better chance of… More
Jul 04, 2013 Ambassador Blog

Collaboration for a Cure!

Last summer, I was asked to show my… More
Jul 01, 2013 Ambassador Blog

Eric

In high school, I was a pretty normal… More
Jun 17, 2013 Ambassador Blog

Regina

My name is Regina Russo, I am 31 years… More
Jun 24, 2013 Ambassador

Jean Walsh

What Next? Hi, I am Jean. I am 50 and… More
Jun 10, 2013 Ambassador

Andrea Kiess

At the age of 14, I thought my life was… More
Aug 21, 2014 Ambassador Blog

Spotlight on Emily

My name is Emily! I have Friedreich's… More
Jun 06, 2013 Ambassador Blog

FARA Ambassadors

The FARA Ambassadors are a group of… More
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