FARA News

2011

Winter 2011 - 2012 eAdvocate now available
Dec 14, 2011

An appeal from Ron Bartek
Help support the NIH budget
Write Congress to express your concerns
Dec 8, 2011

Gabe Ford takes anti-bullying message to Thanksgiving Day parade
Nov 19, 2011

Good news for all patient families!
The U.S. Senate and House of Representatives announced today their agreement to provide the FDA in its FY 2012 budget a $50 million increase over its FY 2011 level. This was especially good news because the Senate bill had proposed a $50 million increase while the House bill would have cut the FDA budget by $285 million. FARA is a very active member of the Alliance for a Stronger FDA – the organization that works so hard to secure robust support for the FDA. Knowing how important a strong, well resourced FDA is to development of treatments and a cure for FA, FARA participated in many meetings with the Alliance for a Stronger FDA and many members of congress and wrote letters to the Senate and House leaders of the Senate-House conference committee on this issue.
Nov 15, 2011


Reason To Run - Kris Goldhair and Team FARA in the NY Marathon
Nov 1, 2011

Not Accepting by Larry Sacks
Article about FA-ITH Fundraiser
Oct 27, 2011

Ride Ataxia announces
2011 AAI Grant Recipients
Oct 26, 2011



Century 21 Golf Tournament
Video Recap of Sep 22nd event
Oct 20, 2011

ViroPharma licenses rights from Intellect Neurosciences for product candidate for Friedreich's Ataxia
Sep 30, 2011



Fighting the Odds - by Larry Sacks
Sep 28, 2011

Faith, Friedreich’s Ataxia in the Heart — Shoot for the Cure
Sep 21, 2011



Laidlaw Group unveils movie trailer "There is No Limit"
during The FA Project’s Fundraising Cruise
Sep 15, 2011

Race for Grace Could Use Your Support
Sep 15, 2011



Friedreich's Ataxia Fundraiser a Success
Sep 14, 2011

Community Day to Cure FA - Walk and Picnic Sept. 11
Sep 5, 2011

Book sales to benefit FARA - "Still Dancing" by Gabrielle Ford
($5 per book goes to FARA)
Sep 1, 2011



The 2011 FARA Energy Ball was a great success!
This video about FARA's progress was shown at the Ball
August 30, 2011

Fourth Annual
Friedreich's Ataxia Symposium
Online Registration Now Open!
CHOP - Philadelphia, PA
Brochure
Registration Form
August 18, 2011

Welsh family Radio Interview with Michael Parks
Talking about FA and the Bash in the BackYard
August 6, 2011



Positively Tampa Bay: FARA Energy Ball
ABC Action News speaks with Ron Bartek about FARA, FA, and the FARA Energy Ball
August 4, 2011

STATegics, Inc. announces a grant from FARA to Support it's Program to Develop Small Molecule Mimetics of Erythropoietin for the Treatment of Friedreich's Ataxia
August 2, 2011

FARA featured in the "Member Spotlight" for the Alliance for a Stronger FDA
July 23, 2011

2011 Summer eAdvocate available
July 18, 2011

SAVE THE DATE!
4th Annual Friedreich's Ataxia Symposium
October 8th, 2011
July 18, 2011

Gathering lets people with disease know they're not alone
95 Attend 2011 FA Woodstock
July 17, 2011

FARA/RepliGen Webinar – Tuesday July, 26th 1:00pm EST
Webinar Summary
July 13, 2011

Cruising for a Cause: Melrose-Based FA Project Announces Fundraising Partnership with Boston’s Best Cruises
July 5, 2011


Bryant named grand marshal of Fourth of July parade
July 2, 2011

Determined to fight it
His girl's life at risk from a rare disease, dad is leading the charge
June 19, 2011

FARA President's Letter
June 16, 2011

FARA Press Release: EPI-A0001 Improves Neurological Outcome Endpoint in 28-Day Phase 2A Double-Blind Placebo-Controlled Clinical Trial in Friedreich’s Ataxia
June 11, 2011

Edison Pharmaceuticals Announces Results of EPI-A0001 Phase 2A Double Blind Placebo Controlled 28-day Clinical Trial in the Mitochondrial Disease– Friedreich’s Ataxia
June 10, 2011

FARA Grant Funding Opportunities 2011
June 10, 2011

FDA Grants Orphan Drug Designation to EPI-743 and Allows Expanded Access in Mitochondrial Diseases Including Friedreich’s Ataxia
June 8, 2011

Vote for The Ataxian documentary in The Pepsi Refresh Project
June 1, 2011

Strasbourg FA Scientific Meeting Impressions
and
Conference Photos and Thanks to Partnes and Sponsors
May 16, 2011

FA Common Data Elements -
Call for Public Comment til June 30th 2011
May 12, 2011

Santhera Presents Positive Data from IONIA Open-Label Extension Study in Friedreich's Ataxia at the Fourth International Friedreich's Ataxia Scientific Conference
May 5, 2011

Press Release
4th International Friedreich’s Ataxia Scientific Conference to Convene May 5th-7th 2011
May 1, 2011

Intellect Neurosciences Files Orphan Drug Application in the United States for its Clinical Candidate OX1 for the Treatment of Friedreich’s Ataxia
April 12, 2011

Tiffany's Friends fundraiser in the News
March 30, 2011

Sunshine Ranches Superbowl Party Raises Thousands
March 7, 2011

Rare Diseases Take Spotlight in Annual Event

February 26, 2011

The Friedreich’s Ataxia Research Alliance
Joins Millions Around the World
To Observe Rare Disease Day

Sample Letter to the Editor (Word)
February 19, 2011

FARA receives a 4 star rating from Charity Navigator



February 4, 2011

Preston Lynch competes in swimming while dealing with Friedrich's ataxia
VIPER SWIMMER'S COURAGEOUS STORY
January 28, 2011

Have a Heart - Matching Donation Challenge
Give from your heart, and double the impact of your donation
January 22, 2011