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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!


 

A Mom's Perspective on Participating in Clinical Research

Six months ago, our 10-year-old son Jake was diagnosed with Friedreich’s Ataxia. When his neurologist explained FA, she told us that FA has no treatment and no cure. The diagnosis is staggering. Learning that there is no treatment and no cure (yet!) took our breath away.

JakeJuip10After taking a few months to cope privately with the diagnosis, we were ready to talk about it publicly. By that time, we had combed the internet and had read everything we could find about FA. We are a family always on the go. We just couldn’t sit idly by and watch the disease progress. We needed to do something to respond to Jake’s diagnosis. Consequently, we were so grateful to learn about and attend the Patient Symposium in Philadelphia last October. At the symposium, we learned about biomarker studies and clinical trials. (Biomarker studies have no direct benefit for the participants, but the studies gather specific information about FA patients that can be used in future clinical trials. Clinical trials explore whether or not a specific therapy is safe and effective for humans.) Each study and trial has specific qualification criteria, so I compiled a list of the studies and trials that Jake was eligible for, and I called Jen Farmer, Executive Director of FARA. She’s so knowledgeable and helpful. She spent time explaining each of them and their objectives. Importantly, she also outlined the time commitment for each. Because FA is a progressive disease, most of the studies and trials require repeat visits to track the disease’s progression over time. All of the studies and trials would require travel, so we needed to balance our desire to contribute to FA research versus the practical constraints of school schedules, childcare for our other children while we travel, and cost. 

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

JakeJuip9Hi! My name is Jake and I want to tell you about being in a clinical trial. But first, let me introduce myself. I'm 10-years-old and in 5th grade. I live in Grosse Pointe, Michigan. I was diagnosed with Friedreich's Ataxia in August 2016 because I was stumbling around a lot. Doctors looked at me more, and we found out that I have FA.

People might think biomarker studies and clinical trials are scary and embarrassing, but it's actually just you and a team of awesome doctors. I've been in four biomarker studies and one clinical trial, and I can tell you firsthand that they're not scary. They are exciting and full of hope and show you that they're getting closer to a cure. 

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2017 Move Your Way for Rare Disease Day

MYW2017 blog

Rare Disease Day aims to raise awareness around the world of rare diseases and their impact on patients' lives. To join these efforts, let's tell the world about FA! Here's an updated take on the Move Your Way for Rare Disease Day Campaign...

We're asking the FA community to submit a short (30 second) video clip showing how you move your way living with Friedreich's Ataxia

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FA Hangouts - January 2017

jan17hangouts smallThe FARA Ambassador Program presents an FA Hangout talking about: FA and sleep. Does having FA impact your sleep? If so, how do you manage? Have you had a sleep study? Let's talk about ways we can help each other make sleeping much better!

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 January 24th, Wednesday January 25th, and Thursday January 26th (mark your calendars, FA Hangouts will be the last Tuesday, Wednesday, and Thursday of the month, except on holidays and the like) at 8-9:30 PM EST all three days.

How: Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangout capacity. 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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FA Hangouts - December 2016

The FARA Ambassador Program presents an FA Hangout talking about: your favorite songs/song. After all three Hangouts we’ll have this month, the leader of this month’s hangouts, Jake Tompkins, will make a YouTube playlist of all our favorites. All people who participated this month will be able to access the playlist. How fun will that be?

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, December 27th, Wednesday December 28th, and Thursday December 29th (mark your calendars, FA Hangouts will be the last Tuesday, Wednesday, and Thursday of the month, except on holidays and the like) at 8-9:30 PM EST all three days.

How: Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangout capacity. 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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