Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

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!


Roundtable for Rare Disease

ARMroundtableAs Rare Disease Day 2016 is today (February 29), it is only fitting that I talk about my experience speaking  at the Alliance for Regenerative Medicine’s (ARM) Roundtable for Rare Disease (alliancerm.org/event/arms-rare-disease-roundtable) at the end of January. This event was cohosted by FARA. Along with doing much of the emceeing, FARA’s (our) Ron Bartek also chaired a panel discussion on collaborating on cures for rare disease.

When Jen Farmer asked me to speak, I was incredibly honored and immediately said yes. Then, I realized I had to say something and in order to say it well, I should know what regenerative medicine is and what ARM does. As the name regenerative indicates, regenerative medicine is focused on making organs and tissue that have been damaged by disease, injury, and aging well again. (Three cheers for that I say!!) This may sound like medicine as we know it, but what makes this approach unique is that it is inclusive of not just biological science, but also technological and chemical science. So, it doesn’t let medicine lay claim to improving the lives of patients, it says we need lots of collaborators to do that and we shouldn’t just be looking to one field. Collaborators. That’s what ARM does (FARA too!), advance regenerative medicine by bringing potential and active collaborators together. And, at its essence, to me, that is what the roundtable was about. How do patient advocates, patient groups, academics, and pharmaceutical companies collaborate to cure disease? 

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

TriciaHerman Maul1Hi, my name is Tricia. I was diagnosed with Friedreich's Ataxia via a DNA test at the age of 28. My diagnosis was no surprise as my sister, Tara had been diagnosed with FA in 1997. When I received my diagnosis the neurologist also handed me a paper about FARA and information on how to enroll in their patient registry (which I immediately did). After years of researching Friedreich's Ataxia I had never found information on FARA and was enthusiastic to become involved. In 2009 my husband, sister, and myself attended the symposium in Philadelphia where we met so many wonderful people and started connecting with the FA community. Since then we have attended FAWoodstock, Ride Ataxia Chicago, and held our own FARA Fundraisers. Through FAWoodstock I have been able to participate in blood draws, skin biopsies, hearing studies, and network with FARA representatives.

In November 2015 I received a message from Jen Farmer asking me to participate in a research study at the University of Rochester, New York entitled “In-Vivo Confocal Imaging of Meissner's Corpuscles as a Biomarker in Friedreich's Ataxia (FA)”. Without much hesitation I was excited to be “nominated” to finally be a part in the research and trial efforts of FARA. After being diagnosed with Friedreich's Ataxia in 2008 I had been patiently waiting for my opportunity to be part of a trial that wasn't demanding time away from home to complete. Living in Western New York with my husband, CJ and 3 children: Amelia (11), Calvin (9), and Justin (8) the location and requirements of the trial were very important to me. After speaking with the study coordinator, Janet Sowden I found this study would only require 3 day visits (Nov. 2015, May 2016, Nov. 2016) to Rochester, NY which is only 90 minutes from my home. Arrangements were made for CJ and I to spend the night in a hotel just minutes away from the University of Rochester Medical Center for the following week. 

UCLA/FARA Symposium

UCLAsym2016

Hopes and Heroes

Hello! My name is Mekayla, I’m 18 years old and a senior in high school! I was diagnosed with Friederich’s Ataxia in July of last year. My hobbies include dancing (which I’m still trying to do!) and babysitting my nieces and nephew. 

About a week before the symposium my mom had thrown around the idea of possibly going to UCLA. We have never been to anything like it before, and my mom and I agreed that it would be an amazing experience and very informational! 

RJ Mercure

RJ MecureName: RJ Mercure

Age: 29

Where do you call home? Just recently moved to Ashburn Virginia, but would call home Chesapeake Virginia.

Education: Graduated high school in 2004, then went to Woodrow for business, came home in 2009 and found nothing, even had a job coach. So I became a bum at home. I watched animal planet every day and decided to apply to my local zoo ( the Virginia Zoo ) as a keeper aide and got it!! From 2010-2015, best time of my life!!

What's a typical day for you? Need a new job/friends for new area.

How long have you known you are living with FA? Since I was 12, the 7th grade.

FA Hangouts - February 2016

The FARA Ambassador Program presents an FA Hangout talking about the National Organization of Rare Disorder’s motto: “Alone we are rare together we are strong.” We’ll talk about what it is like to have a rare disease, Friedreich’s Ataxia. What do we have in common with others with rare diseases (like taking a long time to be diagnosed)? What’s different? What does Rare Disease Day mean to you?

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.

Hangouts will be held Wednesday, February 24 and Thursday, February 25 (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. 

Page 78 of 121

SHARE

FacebookTwitterLinkedInYoutube
Event I.jpg

 

Archived in
  the Ambassador Blog


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