Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

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!


 

Janesh Wadhwa

Name: Janesh Wadhwa

Age: 22

Where do you call home? Haryana, India

Education: I have completed high school and then furthered my education myself.

Employment: I stay at home and take care of myself and I also work as a volunteer at "Wings of Angelz,” that aims to make the world wheelchair friendly. Being a part of this organization gives me a proud sense of achievement of being the change I wish to see in the world.

How long have you been living (or known you are living) with Friedreich's Ataxia? When I was 9+ years old I used to walk weirdly and used to fall ill a lot, my parents thought it was related with my sister’s problem (she was living with FA at that time). So they took me to 1-2 neurologists, but they couldn’t diagnose me and ended up prescribing vitamins, but still things weren’t good with me. So my parents took me to another neurologist, he ordered a genetic test and after a few days I was officially diagnosed with FA. I was 10 at that time.

Add a comment
Read more: Janesh Wadhwa

FARA Newsletter

From the Executive Director

Advancing the Treatment Pipeline Increased stakeholder engagement has been a key factor in advancing our progress towards treatments. In 2014, there have been more individuals with FA, scientists and physicians, industry partners, government partners, and supporters engaged and involved than ever before, and this has been critical to optimizing our progress.

 

All stakeholders are critical to move drugs and therapeutic approaches in the pipeline through the discovery, preclinical and clinical testing process towards approved treatments. To that end, additions to our pipeline, reported results and ongoing trials are highlighted here...KEEP READING

 

President's Message

Dear Friends, In these president's letters, I have often sung the praises of FA families, the FA community and the FARA family for working so well together and doing the hard work needed to put all the pieces in place to enable progress toward treatments and a cure. You have come to know very well how important it is for all of us to be assembling the resources, infrastructure, relationships and partnerships necessary to accomplish our mission. Over the last couple of months, though, I have been truly amazed and greatly encouraged by the fact that we are now hearing this FARA message being broadcast in a wonderful chorus from all our public and private partners...KEEP READING

 

 

FARA Energy Ball Counts Down for the Cure

5...4...3...2...1...Count Down for the Cure! It is easy to be wowed by the numbers of this year's Energy Ball - a sold-out crowd of over 800 attendees, a record-breaking Fund a Cure initiative that raised over $300,000, and an overall event total of $2 million (gross) including in-kind gifts and financial contributions. Even the theme of the event, Countdown for the Cure, showcased numbers on whimsical clocks adorning beautiful centerpieces on every table. Yet the special energy behind those numbers was all about the people - the friends that made up the planning committee, the partners who purchased sponsorship and donated auction items, and the supporters who attended and participated with heartfelt generosity...KEEP READING

 

 

Research Grant Program

Awards, Deadlines and Research Updates During 2014, FARA received 31 letters of intent (LOIs) for our named and general research awards, reviewed 18 new grant applications and funded 10; we anticipate that at least three more will be approved for funding before the end of the year. As well as the 10 new grants, continuation funds were provided for nine projects. So far FARA has provided a total amount of more than $3.9m in research funding during 2014. This amount includes ongoing support for the Collaborative Clinical Research Network (CCRN) and the Penn Medicine/CHOP Center of Excellence, as well as a grant (cofunded with our FRDA advocacy group partner, GoFAR) to the Jackson Laboratory for the development and characterization of additional mouse models that are needed by the FRDA research community for pre-clinical studies...KEEP READING

 

 

 

Don't forget to sign up HERE to receive
the FARA Newsletter.

 

Add a comment

Team FARA: Team Mustangs for Alison

In July of 2012, our daughter Alison Price was diagnosed with Friedreich’s Ataxia. Alison has experienced increasing neurological changes since that time. She struggles to walk on her own, but keeps trying and uses equipment and help as needed. Unfortunately, her heart is affected as well.

My sister Jill Gould, who lives in Largo, Florida and has been helping different groups raise money over the past decade, quickly jumped on board with our FAmily. We discussed a number of ways in which we could raise money. Jill had gotten into running so we decided we would find a half marathon to run and put a Team FARA together. Alison named us Team Mustangs after her interest in horses at that time. We decided that the Savannah Rock and Roll Half-Marathon in November 2013 would be our first race as Team Mustangs for Alison. Savannah is half way between Largo, Florida and Wake Forest, North Carolina. Jill gathered her team in Florida, I gathered mine from Raleigh, and we met in the middle with our sister Amy, a Georgia resident.

Read more: Team FARA: Team Mustangs for Alison

The FARA Ambassador Program presents FA Hangouts

As we know, FA presents many unique challenges to every day life. Solutions are rarely obvious. In some cases we have found solutions. In others we need guidance.

Using the Google Hangouts application, we will be hosting opportunities for open conversations about FA-related topics with people in the community. The first FA Hangout will be Monday, December 22nd from 7 to 8 pm ET. We will have one Hangout with a different topic each month. The program allows for 10 people to be in a video chat room at a time. We will have multiple Hangouts if more than 10 people sign up, so there is no need to worry about not getting a spot.

Add a comment
Read more: The FARA Ambassador Program presents FA Hangouts
Page 81 of 101

SHARE

FacebookTwitterLinkedInYoutube
Family D.jpg

 

Archived in
  the Ambassador Blog