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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

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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!


FA Hangouts - January 2016

The FARA Ambassador Program presents an FA Hangout talking about everyone’s favorite New Year’s resolution: fitness. Tell us how you stay fit with FA, learn how others stay fit! This is sure to be a great way to learn from one another.

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.

Every hangout is open to anyone with FA and a translator if needed.

Hangouts will be held Wednesday January 27 and Thursday January 28 (mark your calendars, FA Hangouts will be the last Wednesday and Thursday of the month, except on holidays and the like) at 7 & 9 PM EST both days. More times will be added if needed. Email fahangouts@gmail.com to sign up or ask questions. Please indicate if there are any times that do not work for you and which times you’d prefer. We will try to accommodate everyone. 

The Drug Development Pathway

The below article was originally published in the Winter 2015/2016 edition of the FARA Advocate.
"Drug Development Series: The Drug Development Pathway"
By Jane Larkindale, PhD

One thing that we all agree on in the FA community is the fact that we would like a treatment or cure for the disease, and we would like it now (if not sooner). This urgency drives everything that FARA does, as we try and get treatments to patients as soon as possible. However, drug development is a tricky business—it takes a lot of steps to go right in order to get an effective new drug to patients. In this series of articles, we will talk about the various steps that are needed in order for us to have a safe and effective new treatment (or at least one where the benefits outweigh the risks).

In this article we will talk through the steps that are required scientifically, and by the Food and Drug Administration (FDA), to go from a good idea to a drug that could be approved by the FDA through standard channels. In future articles (published mainly online) we will talk about the next steps – the process of approval in the US, how to get that drug to patients (through pharmacies and doctors), and how to get it paid for by insurance. In the final article in the series we will discuss the differences between drugs and supplements in how they are regulated and marketed, and the differences between approved drugs, approved drugs that are used off label and supplements, as well as the legal ways to access drugs that may not yet be approved in the U.S. 

Noelle Bouchard

NoelleName: Noelle Bouchard

Age: 28

Where do you call home? Maine

Education (degree(s): I graduated high school in 2006. I started college in 2012 and I am still attending. I am going part-time, so it is going to take me a little bit longer. For the first two years, I was it going for general studies, but recently I have decided to go for behavioral health.

What is your relationship status? Who do you live with? I have had a few long term, serious relationships while having FA. But right now I am single, and I live in an apartment under my mom, dad, two dogs, and my sister Allison. I also have a pet rat in my apartment with me. And no, she does not run loose, she lives in a cage. ;) 

Jonathan Zilles

JonZilles1Name: Jonathan Zilles

Age: 37 on December 31st!

Where do you call home? Atlanta, GA

Education: BA in psychology from Auburn University

How long have you known you are living with FA? I was diagnosed at age 11. My parents noticed I had a funny gait so we went to several neurologists. They were not sure if it was FA or another form of ataxia, as the FA gene had not been discovered yet in 1990.

Are there any others with FA in your family? No, but my family took part in a research study leading up to the FRDA gene discovery. Genetic testing results showed both of my sisters are carriers. 

Rock Around the Clock for FARA

RockAroundtheClock1

On November 28th, the FA community in Rhode Island pulled out their dancing shoes. It was the first Rock around the Clock for FARA and I don’t think it will be the last! From noon to midnight, over 25 musical performers kept the crowd singing, dancing, and tapping to the beat. For twelve hours there was always music to be heard across three rooms at Studio One RI in Lincoln, RI. There were small bands, big bands, DJ’s, singers, even karaoke! 

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