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About FARA
Mission & Organization
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Leadership & Staff
Scientific Advisory Board
FARA Ambassador Program
Our Partners
Advocacy
Media
News & Press Releases
Video Resources
Activities & Events
Contact
Research
Grant Program
Clinical Network & Trials
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Patient Registry
Research Pipeline
For Pharmaceutical Professionals
Research Resources
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Clinical Care Guidelines
Autopsy & Tissue Donation
Featured Scientists
Scientific News
Patient Focused Drug Development
Living with FA
What is FA?
Message for New Families
Cardiac Primer
Basics of Drug Development
Participation in Clinical Trials
Patient Registry
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Clinical Care Guidelines
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Ataxian Athlete Initiative
Meet the Community
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Winter 2012 - 2013
Winter 2012 - 2013
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News & Press Archives
2021 (7)
February (6)
•
FARA Advocacy Newsletter - Feb 2021
•
Rare Disease Day is February 28th, …
•
NAF and FARA welcome the 117th Cong…
•
A Community Statement from Novartis…
•
Monthly Update - February 2021
•
Information on COVID-19 and Friedre…
January (1)
•
Monthly Update - January 2021
2020 (32)
December (4)
•
Webinar: FA Community Call to Actio…
•
Friedreich's Ataxia Center of Excel…
•
Monthly Update - December 2020
•
Central Nervous System Therapeutic …
November (5)
•
December 1st is Giving Tuesday!
•
PTC Therapeutics Announces Initiati…
•
U.S. Senate passes the Bipartisan "…
•
The inaugural International Congres…
•
Monthly Update - November 2020
October (1)
•
Monthly Update - October 2020
September (5)
•
New ICD-10-CM Diagnosis Code G11.11…
•
Global, multi-stakeholder, consorti…
•
rideATAXIA Global Challenge
•
Award for Innovative Mindset
•
Monthly Update - August 2020
August (2)
•
FARA Job Posting - Communications C…
•
Monthly Update - July 2020
July (5)
•
NAF and FARA will be holding their …
•
Third Party Data Breach
•
Strong Partnership Funds the 2020 A…
•
PTC Therapeutics will be hosting an…
•
Monthly Update - June 2020
June (1)
•
FA Research Update
May (4)
•
Monthly Update - May 2020
•
FARA hires Barbara Tate, PhD as FAR…
•
Help FARA Earn a $20,000 Matching G…
•
FARA is excited to launch our FA Re…
April (2)
•
Monthly Update - April 2020
•
Why the FA Global Patient Registry …
March (2)
•
rideATAXIA Dallas 2020 - Thank you!…
•
A Note to Our Community Regarding C…
January (1)
•
FARA job posting - rideATAXIA Event…
2019 (10)
December (1)
•
The Friedreich’s Ataxia Research …
November (3)
•
2019 International Ataxia Research …
•
Freidreich's Ataxia: The CHUM and i…
•
Global Ataxia Advocacy Organization…
October (1)
•
Reata Announces Positive Topline Re…
September (1)
•
12th Annual Friedreich's Ataxia Sym…
July (2)
•
Kyle Bryant Living Life Beyond Circ…
•
Bike ride along I&M Canal in Channa…
May (1)
•
From patient to Researcher
January (1)
•
Advocacy 101: Jump In
2018 (20)
October (5)
•
Joe Brown, 28, inspired his Carolin…
•
Becoming Involved in the FA Communi…
•
7th grader with neuromuscular disor…
•
River Ridge Middle School player sc…
•
'It's just frustrating': Evansville…
September (2)
•
The 9th Annual FARA 5K is just arou…
•
US Open stars embrace chance to giv…
August (3)
•
Race for Matt and Grace golf tourna…
•
11th Annual Friedreich’s Ataxia S…
•
FARA and the Burrows Hill Foundatio…
July (1)
•
Invite and They Just Might Come!
June (3)
•
FARA job posting - Research Portfol…
•
For Father's Day, this dad just wan…
•
North Branford siblings speak-out a…
May (2)
•
Football team makes classmate's wis…
•
Howell High School's Senior Survivo…
April (1)
•
Lend Us Some Muscle! 2018
February (1)
•
Life Is About How We React - Rare D…
January (2)
•
THE ATAXIAN Kicks Off Rare Disease …
•
You May Be Going to the Super Bowl!
2017 (17)
December (1)
•
FARA Job Posting: Communications Co…
October (3)
•
Tell Congress to Keep the Orphan Dr…
•
Friedreich’s Ataxia Community Sta…
•
FARA Announces Recipients of the 20…
September (2)
•
Girl tells author of ‘Wonder’ h…
•
Friedreich’s Ataxia “Voice of t…
August (1)
•
10th Annual Friedreich’s Ataxia S…
June (3)
•
Fitchburg lawyer battling rare dise…
•
Student battling rare disorder — …
•
Four National Organizations, Hundre…
May (1)
•
FARA to Ring The Nasdaq Stock Marke…
March (2)
•
JOIN AN UPCOMING LIVE WEBINAR TO LE…
•
Rare Disease Week on Capital Hill, …
February (3)
•
FA Patient Focused Drug Development…
•
Get Involved: Friedreich’s Ataxia…
•
2nd International Ataxia Research C…
January (1)
•
Family, neighbors unite to fight ge…
2016 (29)
December (3)
•
The latest Advocate Newsletter is a…
•
FARA Job Posting: Patient Engagemen…
•
New York Times Review: A Race to Ra…
November (1)
•
FARA Joins Nasdaq’s Live Broadcas…
August (1)
•
9th annual FA Symposium - Oct 17th,…
July (3)
•
These families who share a rare dis…
•
The Caregiver’s Challenge: Making…
•
Save The Date - 9th annual FA Sympo…
June (7)
•
High School students raise money fo…
•
What it’s like to be a teenager w…
•
Cycle to raise awareness of incurab…
•
Ataxia Research Center at USF is lo…
•
Ashley Sturm - "My last story here …
•
"I couldn’t just sit and wait for…
•
Park High School graduate profile: …
May (4)
•
St. Catherine’s Academy raises mo…
•
FARA receives 2016 NORD Rare Impact…
•
DOING AS MUCH AS A MOM CAN
•
TRAIN - Innovator Spotlight on the …
April (3)
•
Arizona woman to swim across state …
•
Make it a FARA Weekend in Philly!
•
Tod Leiweke Honored as Lightning Co…
March (2)
•
Anna's Army Movie Star Masquerade B…
•
NORD Announces 2016 Rare Impact Awa…
February (4)
•
BWW Review: THE ATAXIAN, Powerful a…
•
The Ataxian movie shows at the Sedo…
•
Saratoga County families highlighte…
•
2015 FARA grassroots events raise o…
January (1)
•
Former teacher continues to beat th…
2015 (38)
December (1)
•
Gavin Lambert, 10, doesn't allow di…
November (3)
•
Ron Bartek receives Lifetime Achiev…
•
Testing the FA-ITH Four Years Later
•
UAB Researchers Receive Funding to …
October (2)
•
Fourth-grader's family, friends tak…
•
Emotional Homecoming Crowning Bring…
September (4)
•
NORD Issues Statement Applauding th…
•
Sigma Phi Epsilon Raising Awareness…
•
USF Health and FARA to host Sept. 1…
•
MDA and FARA Partner to Advance Tre…
August (3)
•
Retrotope announces open enrollment…
•
Set for 6th year, Race for Matt and…
•
REGISTRATION OPEN!- Children's Hosp…
July (1)
•
US House of Representatives Pass 21…
June (3)
•
FARA receives 4 star Charity Naviga…
•
Horizon Pharma plc Initiates Phase …
•
Two sites open and subjects, ages 1…
May (3)
•
World Premiere of “The Ataxian”…
•
Retrotope's dPUFA therapeutic appro…
•
Rep. Gerry Connolly of VA recognize…
April (2)
•
Race for Christina 5K Race Set for …
•
Horizon Pharma plc Receives FDA Fas…
March (4)
•
International Ataxia Research Confe…
•
RTA 408 Phase 2 Trial now enrolling…
•
Catrike Ends Rally to Focus on FARA
•
MassBio News Patient Profile: Jean …
February (7)
•
University of Portland graduate Sam…
•
State Government, Pharmaceutical In…
•
Horizon Pharma plc Submits Investig…
•
Voyager Therapeutics & Genzyme Anno…
•
Dr. Randy Feldman of Feldman Orthod…
•
Move Your Way for Rare Disease Day …
•
Developing a new tool to measure ho…
January (5)
•
Reata Enrolls First Patient in the …
•
Phase 2 Trial with RTA 408 now enro…
•
Choosing Happiness
•
Horizon Pharma announces plans for …
•
7th Annual CHOP FA Symposium Video …
2014 (53)
December (4)
•
FARA Funds Four New Research Grants
•
The Advocate - Winter 2014-2015
•
Consensus Clinical Management Guide…
•
Study of Cardiomyopathy in FA Patie…
November (3)
•
Restaurateur Hosts NB 'Hearts of Ho…
•
Phase 2 Trial with RTA 408 now enro…
•
'Nutcracker Tea' to fight a rare di…
October (2)
•
Kyle Bryant is Gearing Up for Ride …
•
Family making a difference in Fried…
September (3)
•
Reata Announces the Initiation of P…
•
"Tremendous progress" in race again…
•
Albert Richard awarded 'Young Champ…
August (2)
•
"We're not alone anymore": 5th Race…
•
Chondrial Therapeutics, LLC launche…
July (9)
•
A Tampa Bay Rays Gameday Experience…
•
Kyle Bryant receives first-ever AAN…
•
Your invitation to the 7th Annual C…
•
Ride Ataxia; to raise awareness of …
•
2014 Ride Ataxia helping to make a …
•
International effort to fill gap in…
•
The Advocate - Summer 2014
•
Attn Young Investigators - Call for…
•
Abstract Submission Form
June (2)
•
REGENX has granted Voyager a non-ex…
•
Ride raises money for rare disease …
May (1)
•
Alameda: Family riding to save live…
April (5)
•
Join Us in the "We Believe" Initiat…
•
REGENX Biosciences Enters Into Lice…
•
"Portraits of Courage" to Honor Spi…
•
AAVLife start-up company to advance…
•
International collaboration advance…
March (7)
•
Anna Gordon raises awareness for th…
•
FDA Grants Fast Track Status to Edi…
•
Edison Pharma Press Release
•
Woman Battles Genetic Condition on …
•
Determination and focus help two co…
•
$3.25 Million Gift Creates Penn Med…
•
Gavin Lambert meets John Isner at A…
February (4)
•
Voyager Therapeutics, a new gene th…
•
Second Annual Move YOUR Way for Rar…
•
Local College Student Battling Rare…
•
FDA Grants Edison Pharmaceuticals' …
January (11)
•
Edison Pharmaceuticals, Inc. announ…
•
Sixth-Grader Grace Haupt Navigates …
•
International patient advocates par…
•
FARA has 2 Tickets to the Super Bow…
•
Repligen Corporation Announced BioM…
•
Safety and Pharmacology Study of VP…
•
Amanda - Meeting Justin Timberlake
•
Predictive Testing in FA Survey - I…
•
Sixth Annual Friedreich's Ataxia Sy…
•
The Tampa Bay Lightning honors Paul…
•
Agilis Biotherapeutics Completes $8…
2013 (69)
December (3)
•
The Advocate Winter 2013 - 2014
•
Friedreich’s Ataxia Research Alli…
•
Friedreich’s Ataxia Research Alli…
November (4)
•
Ace For A Cure with John Isner rais…
•
North Branford shopping event Dec 7…
•
Coming Together for a Cure - 8th An…
•
FARA earns the highest rating (4 St…
October (5)
•
USF is currently recruiting FA pati…
•
N. Ga. family opens up about effort…
•
6th Grader's Outlook On Life Inspir…
•
Athelete's Diagnosis Inspires Multi…
•
Pioneering Research of a Rare Neuro…
September (9)
•
Dr. Robert Dean and The Lambert Fam…
•
Celebrating Ataxia Awareness Day, w…
•
'If I can affect change in other pe…
•
Dozens ride to raise awareness abou…
•
Sam Bridgman pedaling for a cure in…
•
Mapping the anatomical and function…
•
FARA Energy Ball 2013 Video
•
Tampa at center of research to cure…
•
Clinical Research at USF may develo…
August (4)
•
Recruitment Notice: Study of interf…
•
Announcing the 6th Annual Friedreic…
•
Announcing the FARA/USF Health Scie…
•
FARA recently met with Senator Bob …
July (7)
•
Clinical Trial Announcment: Call fo…
•
Prominent Friedreich’s ataxia spo…
•
New Newsletter Available: The Advoc…
•
Villa Park teen rides to raise mone…
•
Have Wheels, Will Ride: Teenage Gir…
•
Interview with Kristin Jones Winner…
•
Emily Young and Ride Ataxia on ABC …
June (4)
•
GCMS senior to ride for cure in Cha…
•
Cody Brunette tops Swim Around Key …
•
FARA Webinar – FA Treatment Pipel…
•
Va. Beach event targets neuro-muscu…
May (8)
•
Kyle Bryant From Ride Ataxia
•
Poem by Christian Maugee: A Disea…
•
Friedreich's Ataxia Awareness Day i…
•
Swimming for a cause, swimming for …
•
Sam Bridgman Stands From Wheelchair…
•
Join Us in "A New FA" Initiative fo…
•
Fundraising for Friedreich’s Atax…
•
Rochester Undergrads Raise $20K for…
April (6)
•
Race for Christina Will Support Fri…
•
Glen Burnie woman rides through adv…
•
Sam Bridgman: The University of Por…
•
Save The Date! Oct 14, 2013 - 6th A…
•
Students lead awareness campaign fo…
•
A study at the University of Minnes…
March (4)
•
Annual run spreads awareness for ra…
•
Just Like Me: The Taylor Family Fou…
•
Young Woman With Rare Disease Cycle…
•
Rider Not Letting Ataxia Stop Race …
February (9)
•
Rare Diseases Touch Lives
•
Pasco family deals with rare diseas…
•
Announcing "Move YOUR Way" Initiati…
•
Altadena mother swaps wheelchair fo…
•
Team FARA's Beth Bax raises awarene…
•
'Cramming 72 years into 27': Book b…
•
EPI-743 Clinical Trial begins at UC…
•
FARA Spokesperson, Kyle Bryant, was…
•
Altadena and Santa Clarita Women Un…
January (6)
•
Industry lends muscle to genetic di…
•
Tennis Channel coverage of Fara's A…
•
STATegics, Inc. Announces a New Gra…
•
FDA Recognizes 30 Heroes Changing L…
•
Counting her Blessings: Islander li…
•
USF Ataxia Research Center announce…
2012 (25)
December (3)
•
Medical Mysteries: Cerebral palsy p…
•
John Isner & Kyle Bryant Discuss th…
•
Living the Decision: A Pocket Guide…
November (4)
•
Genetic Counseling Students Volunte…
•
EPI-743 Phase 2B Friedreich Ataxia …
•
FARA leads the Neuromuscular Commun…
•
300 take part in Hayden's Hope even…
October (1)
•
Fundraiser scheduled for Hayden Des…
September (5)
•
Free concert in Queensbury to draw …
•
Amy Scherzer's Diary: Partying at t…
•
2012 FARA Energy Ball Video
•
USF Health to lead new Friedreich's…
•
Trike brings thrilling rides for bo…
August (2)
•
James Blake & Kyle Bryant - Confide…
•
Update your FARA Patient Registry A…
July (1)
•
FA Symposium at Children's Hospital…
June (1)
•
Interview with Kyle Bryant about Ri…
May (3)
•
Friedreich's Ataxia Awareness Day i…
•
St. Catherine’s Annual Jog-A-Thon…
•
Impossible is Nothing.
April (2)
•
Junior receives award named in memo…
•
Family fights disease through fundr…
March (3)
•
North Texas Bike-A-Thon For Neuromu…
•
Denton bike riders aim to beat rare…
•
Teen's rare disease disconnects bra…
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