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About FARA
Mission & Organization
Financials
Leadership & Staff
Scientific Advisory Board
FARA Ambassador Program
Our Partners
Advocacy
Media
News & Press Releases
Video Resources
Upcoming Activities & Events
Contact
Research
Grant Program
Clinical Network & Trials
Scientific Conferences
Patient Registry
FARA Directed Projects
FARA Funded Research
Research Pipeline
For Pharmaceutical Professionals
Research Resources
For Physicians
Institutional Supported Programs
The FA CollaMap
Clinical Care Guidelines
Autopsy & Tissue Donation
Featured Scientists
Scientific News
Patient Focused Drug Development
Living with FA
What is FA?
Message for New Families
Participation in Clinical Trials
Clinical Care
Clinical Care Guidelines
Patient Registry
Meet the Community
Family Support & Resources
Cardiac Primer
Ataxian Athlete Initiative
Ways to Help
Ways to Donate
rideATAXIA
Team FARA
FARA Energy Ball
Grassroots Fundraising
Shop the FARA Store
Fundraising Tools
Legacy Giving
Raising Awareness
Advocacy
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What is FA?
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Fall 2007
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News & Press Archives
2023 (7)
February (1)
•
Advocacy Newsletter - February 2023
January (6)
•
Monthly Update - January 2023
•
FA Monthly Research Update - Jan 20…
•
Informational Q&A session with Desi…
•
Dr. Stepanova Presented with $20,00…
•
Hereditary Ataxias Added as Eligibl…
•
Advocacy Newsletter - 2022 Recap
2022 (61)
December (4)
•
FARA Job Posting: Communications Di…
•
FARA Job Posting: Communications & …
•
Minutes Of Science - Episode 15: 20…
•
Updated Clinical Management Guideli…
November (1)
•
FA Monthly Research Update - Nov 20…
October (3)
•
Ataxia Research Flash Talk Competit…
•
FA Monthly Research Update
•
Minutes of Science - Episode 14: Co…
September (4)
•
Virtual Hill Day Celebration – Se…
•
FARA Informational Webinar with Lar…
•
Monthly Update - September 2022
•
FA Monthly Research Update
August (6)
•
Informational Webinar on Omav Headl…
•
The Legacy of FA Woodstock & The An…
•
Monthly Update - August 2022
•
FA Researcher Monthly Update - Augu…
•
Summary Slides & FAQs from Informat…
•
Advocacy Newsletter - August 2022
July (5)
•
FARA's Annual Donor Impact Report
•
Monthly Update - July 2022
•
FA Researcher Monthly Update - July…
•
Minutes of Science - Episode 13: Ha…
•
Registration Now Open!- United Agai…
June (5)
•
Monthly Update - June 2022
•
FA Researcher Monthly Update - June…
•
FARA Job Posting: Director of Clini…
•
Advocacy Newsletter - June 2022
•
Strong Partnership Funds the 2022 A…
May (9)
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The Pathway Continues to Grow!
•
rideATAXIA Philly & FA Symposium - …
•
2022 FARA Flash Talk Series - Part …
•
2022 FARA Flash Talk Series - Part …
•
Monthly Update - May 2022
•
2022 FARA Flash Talk Series - Part …
•
FA Researcher Monthly Update - May …
•
Minutes of Science - Episode 12: Pa…
•
2022 FARA Flash Talk Series - Part …
April (6)
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Office Hours with FARA
•
SAVE THE DATE! United Against Atax…
•
Join Us in May for the FA Research …
•
Monthly Update - April 2022
•
Friedreich's ataxia Community Resea…
•
Minutes of Science - Episode 11: Ro…
March (6)
•
Advocacy Newsletter - March 2022
•
Office Hours with FARA
•
FARA Job Posting: Communications & …
•
FARA/CHOP FA Symposium – Septembe…
•
FA Researcher Monthly Update - Marc…
•
Minutes of Science - Episode 10 - F…
February (7)
•
Monthly Update - March 2022
•
Advocacy Newsletter - February 2022
•
The Ataxian Re-Release on YouTube!
•
New CCRN site - St. Jude Children's…
•
Monthly Update - February 2022
•
February Monthly Update for Researc…
•
Minutes of Science - Episode 9 - FA…
January (5)
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FARA has two tickets to the 2022 Su…
•
FARA Job Posting: Administrative & …
•
FARA Job Posting: Director of Patie…
•
Advocacy Newsletter - December/Janu…
•
January Monthly Update for Research…
2021 (49)
December (2)
•
Monthly Update - December 2021
•
December Monthly Update for Researc…
November (3)
•
Giving Tuesday is November 30th
•
November Monthly Update for Researc…
•
FARA Advocacy Newsletter - October/…
October (3)
•
Monthly Update - October 2021
•
Minutes of Science - Episode 8 - "F…
•
October Monthly Update for Research…
September (4)
•
2021 United Against Ataxia Hill Day
•
Monthly Update - September 2021
•
FARA Advocacy Newsletter - Septembe…
•
August Monthly Update for Researche…
August (8)
•
United Against Ataxia Hill Day - Re…
•
FARA job posting - rideATAXIA Event…
•
FARA Minutes of Science - Episode 7
•
Monthly Update - August 2021
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Register for the USF Friedreich's A…
•
July Monthly Update for Researchers
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Information on COVID-19 and Friedre…
•
Celebrating One Year of The Pathway…
July (4)
•
FARA Minutes of Science - Episode 6
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Monthly Update - July 2021
•
FARA Advocacy Newsletter - June/Jul…
•
June Monthly Update for Researchers
June (5)
•
FARA's 2020 Annual Donor Impact Rep…
•
Monthly Update - June 2021
•
FARA Minutes of Science
•
May Monthly Update for Researchers
•
FARA - FA Treatment Pipeline Webin…
May (8)
•
FARA Advocacy Newsletter - May 2021
•
2021 FARA Flash Talk Series - Part …
•
2021 FARA Flash Talk Series - Part …
•
FA Treatment Pipeline Webinar June …
•
FARA Flash Talk Series - Part 2 - M…
•
Introducing The FA App!
•
FARA is proud to present: The first…
•
Monthly Update - May 2021
April (3)
•
FARA Advocacy Newsletter - April 20…
•
Join Us in May for the FA Research …
•
Monthly Update - April 2021
March (2)
•
FARA Advocacy Newsletter - March 20…
•
Monthly Update - March 2021
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
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Letter to FDA & Reata Pharmaceutica…
January (1)
•
Monthly Update - January 2021
2020 (31)
December (4)
•
Webinar: FA Community Call to Actio…
•
Friedreich's Ataxia Center of Excel…
•
Monthly Update - December 2020
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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…
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 (16)
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 (28)
December (2)
•
The latest Advocate Newsletter is a…
•
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 (40)
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 (2)
•
Voyager Therapeutics, a new gene th…
•
Second Annual Move YOUR Way for Rar…
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