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News & Press Releases

Here you will find the most recent organizational news from FARA, including information on events, and awareness and advocacy initiatives. To locate an article from a certain date, please use the archives on the right side of your screen.


FA Monthly Research Update - June 2023

Details
Written: Friday, June 9, 2023

Research news banner image


FARA Flash Talks Awards
Thank you for celebrating FA awareness day by attending the FARA Flash Talks in May. This year’s presentation prizes will go to: 

  • Tyler Perfitt  – Pfizer -  A new mouse model to study heart failure in FA
  • Elizabeth Mercado  - University of Pennsylvania - Studying the brain of an FA mouse model
  • Kristian Want  - CNRS-CEA-Université Paris-Saclay -  Searching for frataxin-replacing molecules through virtual screening
  • Shweta Sahni - AIIMS, New Delhi and CSIR-IGIB, New Delhi -  Blood-based inflammation as a biomarker for FA clinical trials  

Congratulations and thank you to all of the junior investigators who participated!

More... Read the full Monthly Research Update
 
 

FARA Celebrates the 15th Annual Ataxian Athlete Initiative (AAI) for People with Ataxia

Details
Written: Monday, June 5, 2023

DOWNINGTON, Pa. – June 2023 – The Friedreich's Ataxia Research Alliance (FARA), in partnership with the Burrows Hill Foundation, Catrike, and the Texas Irish Foundation, is pleased to offer adaptive cycling equipment through the Ataxian Athlete Initiative (AAI). For the last 15 years, this unique program has been providing adaptive cycling equipment to people with ataxia.

This year’s AAI adaptive cycling equipment recipients have demonstrated a strong desire to stay healthy and fit despite their progressive disabilities. These recipients are Dylan McDonnell, Gansevoort, NY; Kevin Kelly, Lakewood, OH; Mekayla Holm, Cottage Grove, MN; Monica Caliendo, Southington, CT; and Ron Greer, Tucson, AZ.

“Catrike has been a supporter of the AAI for many years. With recumbent trikes, people of all abilities can experience the freedom of cycling, and we are humbled to be able to provide that feeling to these worthy individuals living with ataxia,” said Mark Egeland, GM, Catrike. catrike.com

Ataxia is a debilitating neuro-degenerative disease affecting children and adults. Friedreich's ataxia (FA) is the most common of inherited ataxias, affecting balance and coordination and has symptoms such as vision and hearing loss and life shortening heart complications.

As the lead sponsor, the Burrows Hill Foundation generously provided the funding for the 2023 AAI. 

“The Burrows Hill Foundation is honored to be a part of the AAI’s work year after year,” added Sam Hill, The Burrows Hill Foundation. “These trikes are more than just a fun activity. To those living with ataxia, they are an opportunity to develop physical and mental strength and to stay active in a way they may have not thought possible.”

AAI grants are administered through a competitive application process. Applicants research the most appropriate adaptive cycling equipment to suit their abilities and describe how such equipment would help them to reach their fitness goals and improve their quality of life.

After taking a test ride, recipient Mekayla Holm wrote, "Within minutes I got the hang of the different controls, and one thing was for sure: I felt like I was on top of the WORLD. I felt so free and independent."

Visit curefa.org/aai for more information and to view more photos of past recipients. The next application cycle begins in Spring 2024.

About Friedreich's Ataxia Research Alliance

The Friedreich's Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to curing Friedreich's ataxia (FA) through research. FARA grants and activities provide support for basic and translational FA research, pharmaceutical/biotech drug development, clinical trials, and scientific conferences. FARA also serves as a catalyst, between the public and scientific community, to create worldwide exchanges of information that drive medical advances. For more information about FARA, visit curefa.org. 
facebook.com/curefa | @CureFA_org | CureFA.org

About The Burrows Hill Foundation

The Burrows Hill Foundation to Fight Friedreich’s ataxia (FA) is a 501(c)(3), non-profit, tax-exempt organization established to raise public awareness of FA, to raise money for research to find a cure for FA, and to assist those affected by FA. For more information about The Burrows Hill Foundation, visit burrows-hill.org.



Advocacy Newsletter – May 2023

Details
Written: Sunday, May 28, 2023



How does the Debt Ceiling debate impact FA research?
A Call to Action!


President Biden and Speaker McCarthy just announced they have reached an agreement regarding the debt ceiling. What exactly is the debt ceiling? The debt ceiling, also known as a debt limit, is the maximum amount of money that the US government is authorized to borrow to fulfill its financial obligations. When the federal government spends more than it brings in through taxes and other revenue, it must borrow money to pay its bills.

The Constitution requires Congress to authorize borrowing. A debt limit was first created in 1917 to finance mobilization efforts in World War I and further codified in 1939 to allow the Treasury to issue debt up to a certain limit without approval from Congress. The debt ceiling has been raised 78 times since 1960, under both Republican and Democratic Presidents. Raising the debt limit itself does not authorize new spending; it allows the US government to pay for decisions already legislated for in prior budgets. If the debt limit is not raised by June 5, the US government will be unable to pay its bills and will default. 

More...   Read the Full Advocacy Newsletter

 

Monthly Update - May 2023

Details
Written: Saturday, May 20, 2023

News Header Graphic


Dear friends,

Every year in May, our community comes together in action for FA Awareness Month. This month is dedicated to hosting educational events and engaging in advocacy—efforts aimed at sharing information about Friedreich's ataxia (FA) and driving progress toward treatments.

So many of you have taken the initiative to share information about FA on social media and engage with FARA. By sharing informative posts, personal stories, research updates, and upcoming events through online platforms, we can connect individuals, provide support, and foster a sense of unity––even when physical proximity is not possible. 

FARA Ambassadors serve as a driving force behind FA Awareness, facilitating meaningful connections, providing valuable insights, and promoting collaboration among various stakeholders—individuals with FA, pharmaceutical companies, regulatory agencies, researchers, and healthcare providers. This month, ambassadors and community members are sharing their stories and experiences to raise awareness and promote patient engagement in research at events hosted by industry partners, including Larimar Therapeutics, Reata Pharmaceuticals, and Solid Biosciences. 

Additionally, we are incredibly grateful for the individuals and families who have organized and actively participated in fundraisers, as their contributions play a vital role in supporting FA research and bringing us closer to finding effective treatments. 

Let's make this FA Awareness Month a time to unite as a community, amplify our voices, and educate others about FA. Your action ignites lasting change and progress. 


Sincerely,
Jen

Jennifer Farmer,
FARA Chief Executive Officer

Read the Full Monthly Update
 
 

FA Monthly Research Update - May 2023

Details
Written: Tuesday, May 16, 2023

Research news banner image


FARA Flash Talks
Join us to celebrate FA Awareness Month by attending the FARA Flash Talks webinars every Thursday in May. Each session will consist of four Flash Talks from postdocs and graduate students, moderated by FA community members. The talks will be limited to five minutes and a single PowerPoint slide, making them suitable for a lay audience. A brief Q&A will follow each talk. You can find the full schedule and links to register here.   

More... Read the full Monthly Research Update
 
 
  1. Join Us in May for the FARA Flash Talk Research Webinar Series!
  2. Advocacy Newsletter - Apr 2023
  3. Monthly Update - April 2023
  4. FA Monthly Research Update - Apr 2023
  5. Monthly Update - March 2023

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News & Press Archives

Jun 09, 2023 News & Press Releases

FA Monthly Research Update - June 2023

FARA Flash Talks Awards Thank you for… More
Jun 05, 2023 News & Press Releases

FARA Celebrates the 15th Annual Ataxian Athlete Initiative (AAI) for People with Ataxia

DOWNINGTON, Pa. – June 2023 – The… More
May 28, 2023 News & Press Releases

Advocacy Newsletter – May 2023

How does the Debt Ceiling debate impact… More
May 20, 2023 News & Press Releases

Monthly Update - May 2023

Dear friends, Every year in May, our… More
May 16, 2023 News & Press Releases

FA Monthly Research Update - May 2023

FARA Flash Talks Join us to celebrate… More
Apr 27, 2023 News & Press Releases

Join Us in May for the FARA Flash Talk Research Webinar Series!

In honor of FA Awareness Month this… More
Apr 21, 2023 News & Press Releases

Advocacy Newsletter - Apr 2023

RARE DISEASE WEEK EXTRAVAGANZA! This… More
Apr 18, 2023 News & Press Releases

Monthly Update - April 2023

Dear friends, FARA believes education… More
Apr 10, 2023 News & Press Releases

FA Monthly Research Update - Apr 2023

This month's Research Update covers the… More
Mar 16, 2023 News & Press Releases

Monthly Update - March 2023

Dear friends, February 28, 2023—Rare… More
Mar 10, 2023 News & Press Releases

FA Monthly Research Update - Mar 2023

This month's Research Update covers the… More
Feb 28, 2023 News & Press Releases

First Medication to Treat Friedreich’s Ataxia Approved on Rare Disease Day!

U.S. Food & Drug Administration… More
Feb 20, 2023 News & Press Releases

Job Posting - Events Program Coordinator

Position: Events Program Coordinator… More
Feb 16, 2023 News & Press Releases

FA Monthly Research Update - Feb 2023

This month's Research Update covers the… More
Feb 02, 2023 News & Press Releases

Advocacy Newsletter - February 2023

ACTION THROUGH ADVOCACY! Rare Disease… More
Jan 23, 2023 News & Press Releases

Monthly Update - January 2023

Dear friends,In FARA's strategic plan,… More
Jan 20, 2023 News & Press Releases

FA Monthly Research Update - Jan 2023

This month's Research Update covers the… More
Jan 11, 2023 News & Press Releases

Informational Q&A session with Design Therapeutics on DT-216

Join us for an Informational Q&A… More
Jan 10, 2023 News & Press Releases

Dr. Stepanova Presented with $20,000 Research Grant from Uplifting Athletes

FOR IMMEDIATE RELEASE Contacts:Alyssa… More
Jan 04, 2023 News & Press Releases

Hereditary Ataxias Added as Eligible Condition for CDMRP Funding!

We're excited to tell you about a big… More
Jan 03, 2023 News & Press Releases

Advocacy Newsletter - 2022 Recap

Advocacy efforts have been moving at… More
Dec 29, 2022 News & Press Releases

FARA Job Posting: Communications Director

Position: Communications Director… More
Dec 29, 2022 News & Press Releases

FARA Job Posting: Communications & Social Media Coordinator

Position: Communications & Social Media… More
Dec 28, 2022 News & Press Releases

Minutes Of Science - Episode 15: 2022 In Review

Check out the latest episode in the… More
Nov 30, 2022 News & Press Releases

Updated Clinical Management Guidelines for FA

Dear friends,The Friedreich's Ataxia… More
Nov 28, 2022 News & Press Releases

FA Monthly Research Update - Nov 2022

This month's Research Update covers the… More
Oct 25, 2022 News & Press Releases

Ataxia Research Flash Talk Competition

Register Today: Ataxia Research Flash… More
Oct 25, 2022 News & Press Releases

FA Monthly Research Update

This month's Research Update covers the… More
Oct 05, 2022 News & Press Releases

Minutes of Science - Episode 14: Community Participation in Research

Check out the latest episode in the… More
Sep 20, 2022 News & Press Releases

Virtual Hill Day Celebration – Sep 21st @ 7pm EDT

Join Us for a Celebration! At the… More
Sep 19, 2022 News & Press Releases

FARA Informational Webinar with Larimar Therapeutics

Join us for an Informational… More
Sep 18, 2022 News & Press Releases

Monthly Update - September 2022

Dear friends,International Ataxia… More
Sep 07, 2022 News & Press Releases

FA Monthly Research Update

This month's Research Update covers the… More
Aug 30, 2022 News & Press Releases

Informational Webinar on Omav Headlines

Understanding the Latest Headlines on… More
Aug 29, 2022 News & Press Releases

The Legacy of FA Woodstock & The Anonymous Estate Gift it Inspired

FA Woodstock, the summer retreat for FA… More
Aug 24, 2022 News & Press Releases

Monthly Update - August 2022

Dear friends, We are gearing up for a… More
Aug 12, 2022 News & Press Releases

FA Researcher Monthly Update - August 2022

This month's Update for Researchers… More
Aug 08, 2022 News & Press Releases

Summary Slides & FAQs from Informational Webinar: Gene Therapy for the Heart in FA - June 27, 2022

FARA, LEXEO Therapeutics, and… More
Aug 05, 2022 News & Press Releases

Advocacy Newsletter - August 2022

Join us for the fourth United Against… More
Jul 21, 2022 News & Press Releases

FARA's Annual Donor Impact Report

Can't see this document? Click Here More
Jul 21, 2022 News & Press Releases

Monthly Update - July 2022

Dear friends, The 'Virtual Research'… More
Jul 18, 2022 News & Press Releases

FA Researcher Monthly Update - July 2022

This month's Update for Researchers… More
Jul 16, 2022 News & Press Releases

Minutes of Science - Episode 13: Hand and Arm function in FA

Check out the latest episode in the… More
Jul 15, 2022 News & Press Releases

Registration Now Open!- United Against Ataxia Hill Day

Registration Has Opened! Your… More
Jun 19, 2022 News & Press Releases

Monthly Update - June 2022

Dear friends, The Pathway donors help… More
Jun 13, 2022 News & Press Releases

FA Researcher Monthly Update - June 2022

This month's Update for Researchers… More
Jun 13, 2022 News & Press Releases

FARA Job Posting: Director of Clinical Research

FARA is seeking a full time Director of… More
Jun 07, 2022 News & Press Releases

Advocacy Newsletter - June 2022

Washington is currently abuzz with… More
Jun 01, 2022 News & Press Releases

Strong Partnership Funds the 2022 Ataxian Athlete Initiative (AAI) for People with Ataxia

DOWNINGTON, PA, June 1, 2021 -- The… More
May 31, 2022 News & Press Releases

The Pathway Continues to Grow!

At FARA, we believe that the road to… More
May 31, 2022 News & Press Releases

rideATAXIA Philly & FA Symposium - Registration now Open!

rideATAXIA Philadelphia & FA Symposium… More
May 26, 2022 News & Press Releases

2022 FARA Flash Talk Series - Part 4

In honor of FA Awareness month in May,… More
May 19, 2022 News & Press Releases

2022 FARA Flash Talk Series - Part 3

In honor of FA Awareness month in May,… More
May 18, 2022 News & Press Releases

Monthly Update - May 2022

Dear friends, This Saturday, May 21st… More
May 12, 2022 News & Press Releases

2022 FARA Flash Talk Series - Part 2

In honor of FA Awareness month in May,… More
May 09, 2022 News & Press Releases

FA Researcher Monthly Update - May 2022

This month's Update for Researchers… More
May 06, 2022 News & Press Releases

Minutes of Science - Episode 12: Patient Reported Outcomes

Check out the latest episode in the… More
May 06, 2022 News & Press Releases

2022 FARA Flash Talk Series - Part 1

In honor of FA Awareness month in May,… More
Apr 28, 2022 News & Press Releases

Office Hours with FARA

Office Hours – April 7th and 12th, 2022… More
Apr 26, 2022 News & Press Releases

SAVE THE DATE! United Against Ataxia Hill Day - September 21, 2022

SAVE THE DATE! 4th Annual United… More
Apr 21, 2022 News & Press Releases

Join Us in May for the FA Research Flash Talk Series!

Join us for the FA Research Flash Talk… More
Apr 15, 2022 News & Press Releases

Monthly Update - April 2022

Dear friends, This monthly update… More
Apr 04, 2022 News & Press Releases

Friedreich's ataxia Community Research News - April 2022

This month's Update for Researchers… More
Apr 01, 2022 News & Press Releases

Minutes of Science - Episode 11: Role of Iron in FA

Check out the latest episode in the… More
Mar 30, 2022 News & Press Releases

Advocacy Newsletter - March 2022

This month's Advocacy Newsletter covers… More
Mar 23, 2022 News & Press Releases

Office Hours with FARA

Office Hours with FARA: Q&A sessions to… More
Mar 22, 2022 News & Press Releases

FARA Job Posting: Communications & Social Media Coordinator

FARA is seeking a full time… More
Mar 21, 2022 News & Press Releases

FARA/CHOP FA Symposium – September 24th – 25th, 2022

SAVE THE DATE! The Friedreich's Ataxia… More
Mar 09, 2022 News & Press Releases

FA Researcher Monthly Update - March 2022

This month's Update for Researchers… More
Mar 03, 2022 News & Press Releases

Minutes of Science - Episode 10 - Frataxin Function

Check out the latest episode in the… More
Feb 25, 2022 News & Press Releases

Monthly Update - March 2022

Dear friends, Rare Disease Day is just… More
Feb 17, 2022 News & Press Releases

Advocacy Newsletter - February 2022

February 28, 2022 marks the fourteenth… More
Feb 11, 2022 News & Press Releases

The Ataxian Re-Release on YouTube!

Help Spread the Word! The award-winning… More
Feb 04, 2022 News & Press Releases

New CCRN site - St. Jude Children's Research Hospital in Memphis, TN

FARA is excited to announce the Center… More
Feb 03, 2022 News & Press Releases

Monthly Update - February 2022

Dear friends, Thank you for your… More
Feb 02, 2022 News & Press Releases

February Monthly Update for Researchers

This month's Update for Researchers… More
Feb 02, 2022 News & Press Releases

Minutes of Science - Episode 9 - FARA's Contribution to Advancing Science

The latest episode in the Minutes of… More
Jan 28, 2022 News & Press Releases

FARA has two tickets to the 2022 Super Bowl for charitable auction

This is your chance to go to Super Bowl… More
Jan 20, 2022 News & Press Releases

FARA Job Posting: Administrative & Program Assistant

FARA is seeking a full time… More
Jan 17, 2022 News & Press Releases

FARA Job Posting: Director of Patient Engagement

FARA is seeking a full time Director of… More
Jan 10, 2022 News & Press Releases

Advocacy Newsletter - December/January 2022

Happy New Year Advocates! 2021 ended… More
Jan 08, 2022 News & Press Releases

January Monthly Update for Researchers

Deadlines for the FARA Grant Program… More
Dec 21, 2021 News & Press Releases

Monthly Update - December 2021

Dear friends, Thanks to your incredible… More
Dec 08, 2021 News & Press Releases

December Monthly Update for Researchers

New deadlines for the FARA grant… More
Nov 24, 2021 News & Press Releases

Giving Tuesday is November 30th

#GivingTuesday, a global day of giving.… More
Nov 15, 2021 News & Press Releases

November Monthly Update for Researchers

RFP Pharmacodynamic Biomarker… More
Nov 11, 2021 News & Press Releases

FARA Advocacy Newsletter - October/November 2021

250 Advocates + 100 Congressional… More
Oct 25, 2021 News & Press Releases

Monthly Update - October 2021

Thank you to everyone who attended the… More
Oct 21, 2021 News & Press Releases

Minutes of Science - Episode 8 - "FACOMS"

Episode 8 of the Minutes of Science is… More
Oct 12, 2021 News & Press Releases

October Monthly Update for Researchers

ICAR 2022: Abstract submission and… More
Sep 23, 2021 News & Press Releases

2021 United Against Ataxia Hill Day

2021 United Against Ataxia Hill Day… More
Sep 16, 2021 News & Press Releases

Monthly Update - September 2021

Our September Monthly Update provides… More
Sep 05, 2021 News & Press Releases

FARA Advocacy Newsletter - September 2021

Hill Day Registration is Open Join NAF… More
Sep 02, 2021 News & Press Releases

August Monthly Update for Researchers

Request For Proposals:Pharmacodynamic… More
Aug 23, 2021 News & Press Releases

United Against Ataxia Hill Day - Registration Now Open

Registration Now Open United Against… More
Aug 21, 2021 News & Press Releases

FARA job posting - rideATAXIA Event Coordinator

FARA is seeking a full time Event… More
Aug 20, 2021 News & Press Releases

FARA Minutes of Science - Episode 7

Episode 7- "The Balancing Act of… More
Aug 20, 2021 News & Press Releases

Monthly Update - August 2021

Dear Friends, The treatment pipeline… More
Aug 20, 2021 News & Press Releases

Register for the USF Friedreich's Ataxia Scientific Symposium

Register for the Symposium Join USF… More
Aug 16, 2021 News & Press Releases

July Monthly Update for Researchers

FARA Newly Awarded Research Grants… More
Aug 03, 2021 News & Press Releases

Information on COVID-19 and Friedreich's Ataxia

There are now several vaccines for… More
Aug 02, 2021 News & Press Releases

Celebrating One Year of The Pathway!

At FARA, we believe that the road to… More
Jul 28, 2021 News & Press Releases

FARA Minutes of Science - Episode 6

Announcing the latest installment in… More
Jul 19, 2021 News & Press Releases

Monthly Update - July 2021

Dear Friends, As part of our ongoing… More
Jul 16, 2021 News & Press Releases

FARA Advocacy Newsletter - June/July 2021

The 10th Annual Rare Disease Week… More
Jul 13, 2021 News & Press Releases

June Monthly Update for Researchers

FARA Grant Program FARA is grateful to… More
Jun 15, 2021 News & Press Releases

FARA's 2020 Annual Donor Impact Report is now available

FARA's 2020 Annual Donor Impact Report… More
Jun 12, 2021 News & Press Releases

Monthly Update - June 2021

Dear Friends, It is an exciting time in… More
Jun 11, 2021 News & Press Releases

FARA Minutes of Science

Announcing the latest installment in… More
Jun 07, 2021 News & Press Releases

May Monthly Update for Researchers

FARA Flash Talks FARA is proud to… More
Jun 02, 2021 News & Press Releases

FARA - FA Treatment Pipeline Webinar - June 2, 2021

FARA hosted a 90 minute webinar on the… More
May 28, 2021 News & Press Releases

FARA Advocacy Newsletter - May 2021

The FA community learned this month… More
May 27, 2021 News & Press Releases

2021 FARA Flash Talk Series - Part 4 - May 27th

FARA is proud to share the last video… More
May 21, 2021 News & Press Releases

2021 FARA Flash Talk Series - Part 3 - May 20th

FARA is proud to share our third Flash… More
May 19, 2021 News & Press Releases

FA Treatment Pipeline Webinar June 2, 2021 at Noon (EDT)

Join us for an FA Treatment Pipeline… More
May 13, 2021 News & Press Releases

FARA Flash Talk Series - Part 2 - May 13th

FARA is proud to share our second Flash… More
May 10, 2021 News & Press Releases

Introducing The FA App!

Dear FA Community members,  I am… More
May 07, 2021 News & Press Releases

FARA is proud to present: The first FA Research Flash Talk!

FARA is proud to present our Flash… More
May 06, 2021 News & Press Releases

Monthly Update - May 2021

Hello friends, Welcome to May and the… More
Apr 29, 2021 News & Press Releases

FARA Advocacy Newsletter - April 2021

Rare Across America gave FA community… More
Apr 26, 2021 News & Press Releases

Join Us in May for the FA Research Flash Talk Series!

Join us for theFA Research Flash Talk… More
Apr 07, 2021 News & Press Releases

Monthly Update - April 2021

Dear friends, The updates in this… More
Mar 23, 2021 News & Press Releases

FARA Advocacy Newsletter - March 2021

If the first FARA advocacy newsletter… More
Mar 06, 2021 News & Press Releases

Monthly Update - March 2021

Dear friends, We are proud to share… More
Feb 19, 2021 News & Press Releases

FARA Advocacy Newsletter - Feb 2021

Welcome to FARA’s first advocacy… More
Feb 16, 2021 News & Press Releases

Rare Disease Day is February 28th, 2021!

Choose one of these three placards to… More
Feb 10, 2021 News & Press Releases

NAF and FARA welcome the 117th Congress

The National Ataxia Foundation (NAF),… More
Feb 09, 2021 News & Press Releases

A Community Statement from Novartis Gene Therapies

Dear Friedreich's Ataxia Community, We… More
Feb 08, 2021 News & Press Releases

Monthly Update - February 2021

Dear friends, As you will see below,… More
Feb 05, 2021 News & Press Releases

Letter to FDA & Reata Pharmaceuticals regard Access to Omaveloxolone

FDA & Reata Pharmaceuticals:Allow… More
Jan 11, 2021 News & Press Releases

Monthly Update - January 2021

Dear friends, As many of you know, FARA… More
Dec 29, 2020 News & Press Releases

Webinar: FA Community Call to Action on January 5, 2021

Webinar: FA Community Call to Action -… More
Dec 10, 2020 News & Press Releases

Friedreich's Ataxia Center of Excellence at CHOP Awarded $1.275 Million to Advance Medical Research

The Friedreich's Ataxia Center of… More
Dec 07, 2020 News & Press Releases

Monthly Update - December 2020

Dear friends, As 2020 draws to a close,… More
Dec 02, 2020 News & Press Releases

Central Nervous System Therapeutic Targets in Friedreich Ataxia

Ian H. Harding, PhD, David R. Lynch,… More
Nov 30, 2020 News & Press Releases

December 1st is Giving Tuesday!

December 1st marks #GivingTuesday, a… More
Nov 30, 2020 News & Press Releases

PTC Therapeutics Announces Initiation of Global Phase 3 Clinical Trial to Evaluate Vatiquinone in Friedreich Ataxia

- Third trial initiated in 2020 from… More
Nov 20, 2020 News & Press Releases

U.S. Senate passes the Bipartisan "NATIONAL ATAXIA AWARENESS DAY OF 2020" resolution

FOR IMMEDIATE RELEASEATAXIA PATIENT… More
Nov 18, 2020 News & Press Releases

The inaugural International Congress for Ataxia Research (ICAR)

ICAR to take place March 15th – 18th,… More
Nov 06, 2020 News & Press Releases

Monthly Update - November 2020

Dear friends, It is with great… More
Oct 01, 2020 News & Press Releases

Monthly Update - October 2020

Dear friends, In October, I usually… More
Sep 30, 2020 News & Press Releases

New ICD-10-CM Diagnosis Code G11.11 for Friedreich’s Ataxia Effective October 1, 2020

A new diagnosis code has been approved… More
Sep 24, 2020 News & Press Releases

Global, multi-stakeholder, consortium launched to study neuroimaging biomarkers for Friedreich Ataxia

FOR IMMEDIATE RELEASE A Natural History… More
Sep 13, 2020 News & Press Releases

rideATAXIA Global Challenge

What is the rideATAXIA Global… More
Sep 12, 2020 News & Press Releases

Award for Innovative Mindset

FARA, the CureFA Foundation, and fara… More
Sep 01, 2020 News & Press Releases

Monthly Update - August 2020

Dear friends, As you know, Fall is the… More
Aug 05, 2020 News & Press Releases

FARA Job Posting - Communications Coordinator

FARA is seeking a full time… More
Jul 31, 2020 News & Press Releases

Monthly Update - July 2020

Dear friends, I hope you and your… More
Jul 30, 2020 News & Press Releases

NAF and FARA will be holding their second Hill day on September 10, 2020

The National Ataxia Foundation (NAF)… More
Jul 29, 2020 News & Press Releases

Third Party Data Breach

Recently, FARA learned of a data breach… More
Jul 15, 2020 News & Press Releases

Strong Partnership Funds the 2020 Ataxian Athlete Initiative (AAI) for People with Ataxia

The Friedreich's Ataxia Research… More
Jul 14, 2020 News & Press Releases

PTC Therapeutics will be hosting an Informational Patient Webinar on July 28th

PTC Therapeutics will be hosting an… More
Jul 02, 2020 News & Press Releases

Monthly Update - June 2020

Hello friends, As we move into summer… More
Jun 02, 2020 News & Press Releases

FA Research Update

Hello friends, As we move from spring… More
May 31, 2020 News & Press Releases

Monthly Update - May 2020

Hello friends, As you know, May is FA… More
May 27, 2020 News & Press Releases

FARA hires Barbara Tate, PhD as FARA’s New Chief Scientific Officer

The Friedreich’s Ataxia Research… More
May 18, 2020 News & Press Releases

Help FARA Earn a $20,000 Matching Gift- Now Through the End of May!

As you know, May is FA Awareness month!… More
May 02, 2020 News & Press Releases

FARA is excited to launch our FA Research Flash Talk series

Have you watched everything on YouTube… More
Apr 28, 2020 News & Press Releases

Monthly Update - April 2020

Our team remains hard at work from… More
Apr 10, 2020 News & Press Releases

Why the FA Global Patient Registry is Important to Me

The first project I took on, when I… More
Mar 30, 2020 News & Press Releases

rideATAXIA Dallas 2020 - Thank you!

Hello y'all! We are together in spirit… More
Mar 13, 2020 News & Press Releases

A Note to Our Community Regarding COVID-19

FARA would like to communicate with the… More
Dec 05, 2019 News & Press Releases

The Friedreich’s Ataxia Research Alliance Promotes Jennifer Farmer, MS to Chief Executive Officer

Downingtown, PA (December 5, 2019) -… More
Nov 26, 2019 News & Press Releases

2019 International Ataxia Research Conference is a Success!

The international scope of ataxia… More
Nov 19, 2019 News & Press Releases

Freidreich's Ataxia: The CHUM and its partners involved in an international study to better understand the disease and its progression over time

Uncoordinated movements, impaired… More
Nov 11, 2019 News & Press Releases

Global Ataxia Advocacy Organizations Unite to Host International Ataxia Research Conference in Washington, DC

On November 14th-16th, the Friedreich’s… More
Oct 16, 2019 News & Press Releases

Reata Announces Positive Topline Results from the MOXIe Registrational Trial of Omaveloxolone in Patients with Friedreich’s Ataxia

ACHIEVED PRIMARY ENDPOINT OF… More
Sep 13, 2019 News & Press Releases

12th Annual Friedreich's Ataxia Symposium at CHOP

Join Us! 12th Annual Friedreich's… More
Jul 30, 2019 News & Press Releases

Kyle Bryant Living Life Beyond Circumstances

Kyle Bryant was crowned king of his… More
Jul 30, 2019 News & Press Releases

Bike ride along I&M Canal in Channahon raises funds for rare disease research

Julie Vallier said she was in shock as… More
May 22, 2019 News & Press Releases

From patient to Researcher

Living with rare disorder helped steer… More
Jan 30, 2019 News & Press Releases

Advocacy 101: Jump In

Here are some great opportunities to… More
Oct 25, 2018 News & Press Releases

Joe Brown, 28, inspired his Carolina classmates, loved the Tar Heels and never gave up

Joe Brown pressed a button, and slowly,… More
Oct 22, 2018 News & Press Releases

Becoming Involved in the FA Community Was the Best Decision I’ve Made

Over the past few years, I have learned… More
Oct 16, 2018 News & Press Releases

7th grader with neuromuscular disorder scores first touch down with help from teammates

PASCO COUNTY, Fla. — Tuesday nights… More
Oct 16, 2018 News & Press Releases

River Ridge Middle School player scores touchdown

Gavin Lambert has a neuromuscular… More
Oct 15, 2018 News & Press Releases

'It's just frustrating': Evansville teen Sam Archuleta battling debilitating disease

EVANSVILLE, Ind. — Walking doesn’t come… More
Sep 17, 2018 News & Press Releases

The 9th Annual FARA 5K is just around the corner

It's the race for "Matt and Grace" The… More
Sep 04, 2018 News & Press Releases

US Open stars embrace chance to give back through charity work

NEW YORK — Celebrity typically comes… More
Aug 21, 2018 News & Press Releases

Race for Matt and Grace golf tournament gets assist from Johnston Firefighters

SUPER SPECIAL SUPPORTERS: John Jasparro… More
Aug 14, 2018 News & Press Releases

11th Annual Friedreich’s Ataxia Symposium - Registration Open!

The Friedreich’s Ataxia Center of… More
Aug 07, 2018 News & Press Releases

FARA and the Burrows Hill Foundation Announce the Recipients of the 2018 Ataxian Athlete Initiative (AAI)

DOWNINGTOWN, PA-- The Friedreich's… More
Jul 27, 2018 News & Press Releases

Invite and They Just Might Come!

The FA community rocks when it comes to… More
Jun 26, 2018 News & Press Releases

FARA job posting - Research Portfolio Manager

FARA is seeking a full time Research… More
Jun 17, 2018 News & Press Releases

For Father's Day, this dad just wants a cure for his daughter

INDIANAPOLIS — Virgil Harris would do… More
Jun 06, 2018 News & Press Releases

North Branford siblings speak-out about growing-up with devastating disabilities

NORTH BRANFORD, Conn. (WTNH) - A North… More
May 09, 2018 News & Press Releases

Football team makes classmate's wish come true

ST. GEORGE (News4Utah) - A young girl… More
May 07, 2018 News & Press Releases

Howell High School's Senior Survivor Raises Record-Breaking Amount

Howell High School’s Senior Survivor… More
Apr 23, 2018 News & Press Releases

Lend Us Some Muscle! 2018

In honor of Friedreich's Ataxia… More
Feb 05, 2018 News & Press Releases

Life Is About How We React - Rare Disease Day - February 28th

Join FARA for a social campaign to… More
Jan 29, 2018 News & Press Releases

THE ATAXIAN Kicks Off Rare Disease Week on Capitol Hill

FOR IMMEDIATE RELEASE "THE ATAXIAN"… More
Jan 17, 2018 News & Press Releases

You May Be Going to the Super Bowl!

Through a generous donation from the… More
Oct 30, 2017 News & Press Releases

Tell Congress to Keep the Orphan Drug Tax Credit!

Dear FA Ambassadors / American FA… More
Oct 27, 2017 News & Press Releases

Friedreich’s Ataxia Community Stays on Top of Science and Stays in Touch

Patients and families dealing with the… More
Oct 10, 2017 News & Press Releases

FARA Announces Recipients of the 2017 Ataxian Athlete Initiative (AAI)

DOWNINGTON, PA-- The Friedreich's… More
Sep 11, 2017 News & Press Releases

Girl tells author of ‘Wonder’ how book hit close and closer to home

Fifth-grader Claire Juip meets R.J.… More
Sep 05, 2017 News & Press Releases

Friedreich’s Ataxia “Voice of the Patient” report

FARA is proud to release the… More
Aug 02, 2017 News & Press Releases

10th Annual Friedreich’s Ataxia Symposium at CHOP

For more information about the… More
Jun 13, 2017 News & Press Releases

Fitchburg lawyer battling rare disease: ‘I want to walk’

It is a rare, inherited, progressive… More
Jun 06, 2017 News & Press Releases

Student battling rare disorder — with a smile — wins national writing contest

A Grosse Pointe fourth-grader's… More
Jun 01, 2017 News & Press Releases

Four National Organizations, Hundreds of Families Impacted, Join Together to Speak with FDA about Drug Development in Friedreich’s Ataxia

HYATTSVILLE, Md. June 1, 2017 — The… More
May 18, 2017 News & Press Releases

FARA to Ring The Nasdaq Stock Market Closing Bell - Friday, May 19th

The Friedreich’s Ataxia Research… More
Mar 19, 2017 News & Press Releases

JOIN AN UPCOMING LIVE WEBINAR TO LEARN ABOUT THE PATIENT FOCUSED DRUG DEVELOPMENT MEETING

JOIN AN UPCOMING LIVE WEBINAR on April… More
Mar 15, 2017 News & Press Releases

Rare Disease Week on Capital Hill, February 27 - March 2, 2017

Ron Bartek and Brigid Brennan joined… More
Feb 20, 2017 News & Press Releases

FA Patient Focused Drug Development Meeting - Your opportunity to tell the FDA what is important to you in finding a treatment for Friedreich’s Ataxia

What is a Patient Focused Drug… More
Feb 20, 2017 News & Press Releases

Get Involved: Friedreich’s Ataxia Patient Focused Drug Development (PFDD) Meeting

Get Involved: Friedreich’s Ataxia… More
Feb 01, 2017 News & Press Releases

2nd International Ataxia Research Conference - September 27-30, 2017 - Pisa, Italy

The 2nd International Ataxia Research… More
Jan 05, 2017 News & Press Releases

Family, neighbors unite to fight genetic disorder

Kristin and Ben Morrow, of Anneslie,… More
Dec 21, 2016 News & Press Releases

The latest Advocate Newsletter is available

The Winter 2016 - 2017 Advocate is now… More
Dec 19, 2016 News & Press Releases

New York Times Review: A Race to Raise Awareness in ‘The Ataxian’

A couple of years back, the ice bucket… More
Nov 28, 2016 News & Press Releases

FARA Joins Nasdaq’s Live Broadcast on #GivingTuesday

FARA, Adverum Biotechnologies,… More
Aug 11, 2016 News & Press Releases

9th annual FA Symposium - Oct 17th, 2016

The Friedreich’s Ataxia Center of… More
Jul 27, 2016 News & Press Releases

These families who share a rare disease just gathered for an international reunion. It may speed along a cure.

LAPORTE, INDIANA — The first time Jake… More
Jul 25, 2016 News & Press Releases

The Caregiver’s Challenge: Making Clinical Decisions for Your Child

Deciding to participate in a clinical… More
Jul 18, 2016 News & Press Releases

Save The Date - 9th annual FA Symposium - Oct 17th, 2016

The Symposium will be held on Monday,… More
Jun 14, 2016 News & Press Releases

High School students raise money for Friedreich's Ataxia

Sioux Falls - A group of high school… More
Jun 14, 2016 News & Press Releases

What it’s like to be a teenager whose body is ground zero for a life-saving medical discovery

When I first meet Josh Wooten at a deli… More
Jun 14, 2016 News & Press Releases

Cycle to raise awareness of incurable condition

A NORTHSIDE man, who has an incurable… More
Jun 13, 2016 News & Press Releases

Ataxia Research Center at USF is looking for volunteers

The Ataxia Research Center at the… More
Jun 11, 2016 News & Press Releases

Ashley Sturm - "My last story here at WTAP may be the most important I've ever told."

Ashley Sturm of WTAP says goodbye - and… More
Jun 06, 2016 News & Press Releases

"I couldn’t just sit and wait for a cure": How this man is raising funds to research his rare condition

BARRY RICE was diagnosed with… More
Jun 06, 2016 News & Press Releases

Park High School graduate profile: Diagnosis altered Mekayla Holm's plans

Mekayla Holm had a plan. She would… More
May 25, 2016 News & Press Releases

St. Catherine’s Academy raises money to fight Friedreich’s Ataxia, heart disease

St. Catherine’s Academy participated in… More
May 18, 2016 News & Press Releases

FARA receives 2016 NORD Rare Impact Award

FARA President- Ron Bartek, Board… More
May 14, 2016 News & Press Releases

DOING AS MUCH AS A MOM CAN

LOCAL MOM’S BIKE RIDE KEEPS RARE… More
May 02, 2016 News & Press Releases

TRAIN - Innovator Spotlight on the Friedreich's Ataxia Research Alliance

Q: Friedreich's Ataxia Research… More
Apr 28, 2016 News & Press Releases

Arizona woman to swim across state lakes for rare disease research

PHOENIX (KPHO/KTVK) - An Arizona woman… More
Apr 13, 2016 News & Press Releases

Make it a FARA Weekend in Philly!

On May 7th, ride with rideATAXIA… More
Apr 04, 2016 News & Press Releases

Tod Leiweke Honored as Lightning Community Hero

Thank you to Tod Leiweke, current NFL… More
Mar 27, 2016 News & Press Releases

Anna's Army Movie Star Masquerade Ball was held Saturday night

The stars came out for a masquerade… More
Mar 17, 2016 News & Press Releases

NORD Announces 2016 Rare Impact Award Recipients to be Honored on May 17

Continuing its annual tradition of… More
Feb 25, 2016 News & Press Releases

BWW Review: THE ATAXIAN, Powerful and Inspiring : The Life Well Lived Is The Life Well Raced

In the rear view mirror of life, we may… More
Feb 23, 2016 News & Press Releases

The Ataxian movie shows at the Sedona Film Festival

PHOENIX (3TV) - The Ataxian is a… More
Feb 23, 2016 News & Press Releases

Saratoga County families highlighted in Rare Disease Movie Night

Dylan McDonnell discusses Friedreich's… More
Feb 01, 2016 News & Press Releases

2015 FARA grassroots events raise over $1 Million for FA research!

At the beginning of 2015, FARA issued a… More
Jan 05, 2016 News & Press Releases

Former teacher continues to beat the odds

“I would like to see a treatment or… More
Dec 03, 2015 News & Press Releases

Gavin Lambert, 10, doesn't allow disorder to hold him back

When Gavin Lambert was 5 years old, his… More
Nov 16, 2015 News & Press Releases

Ron Bartek receives Lifetime Achievement Award

Congratulations to FARA's Founder and… More
Nov 12, 2015 News & Press Releases

Testing the FA-ITH Four Years Later

“I have to say, Friedreich's ataxia… More
Nov 06, 2015 News & Press Releases

UAB Researchers Receive Funding to Seek Biomarkers in Friedreich's Ataxia

The University of Alabama at Birmingham… More
Oct 07, 2015 News & Press Releases

Fourth-grader's family, friends take up fight against her genetic disorder

Wearing their "Hope for To-Morrow"… More
Oct 04, 2015 News & Press Releases

Emotional Homecoming Crowning Brings Awareness

Congratulations to Kyle Waterman,… More
Sep 29, 2015 News & Press Releases

NORD Issues Statement Applauding the Approval of Ensuring Access to Clinical Trials Act

National Organization for Rare… More
Sep 16, 2015 News & Press Releases

Sigma Phi Epsilon Raising Awareness and Research Dollars

FARA is excited to be working with the… More
Sep 14, 2015 News & Press Releases

USF Health and FARA to host Sept. 17 scientific symposium

TAMPA, Fla., Sept. 14, 2015… More
Sep 02, 2015 News & Press Releases

MDA and FARA Partner to Advance Treatments and Care for Friedreich's Ataxia

Alliance is part of an MDA initiative… More
Aug 17, 2015 News & Press Releases

Retrotope announces open enrollment for Friedreich's ataxia clinical trial

"FARA has been working with Retrotope… More
Aug 14, 2015 News & Press Releases

Set for 6th year, Race for Matt and Grace continues to grow

On Sept. 26, for the sixth year,… More
Aug 05, 2015 News & Press Releases

REGISTRATION OPEN!- Children's Hospital of Philadelphia Eighth Annual Friedreich's ataxia Symposium

The Friedreich’s Ataxia Center of… More
Jul 17, 2015 News & Press Releases

US House of Representatives Pass 21st Century Cures

by Ron Bartek, FARA President The House… More
Jun 11, 2015 News & Press Releases

FARA receives 4 star Charity Navigator rating for 5th year in a row

FARA receives 4 star Charity Navigator… More
Jun 05, 2015 News & Press Releases

Horizon Pharma plc Initiates Phase 3 Trial of ACTIMMUNE(R) (interferon gamma-1b) for the Treatment of People With Friedreich's Ataxia

Horizon Pharma plc Initiates Phase 3… More
Jun 04, 2015 News & Press Releases

Two sites open and subjects, ages 10-25 years, needed for Phase III study of ACTIMMUNE in Friedreich's ataxia

Recruiting At: CHOP- Philadelphia, PA… More
May 26, 2015 News & Press Releases

World Premiere of “The Ataxian”: Documentary Features Biking Icon Kyle Bryant’s Legendary Ride Across America

“The Ataxian” premieres at Dances With… More
May 19, 2015 News & Press Releases

Retrotope's dPUFA therapeutic approach in FA highlighted in New Scientist article

Bolstering cells with a dose of heavy… More
May 18, 2015 News & Press Releases

Rep. Gerry Connolly of VA recognizes FA Awareness Day in the House of Representatives

Rep. Gerry Connolly of VA recognizes FA… More
Apr 30, 2015 News & Press Releases

Race for Christina 5K Race Set for Mother's Day at Tyler State Park

This year’s Race for Christina 5K,… More
Apr 10, 2015 News & Press Releases

Horizon Pharma plc Receives FDA Fast Track Designation for ACTIMMUNE(R) in the Treatment of Friedreich's Ataxia

DUBLIN, IRELAND -- (Marketwired) --… More
Mar 24, 2015 News & Press Releases

International Ataxia Research Conference 2015

The Friedreich’s Ataxia Research… More
Mar 18, 2015 News & Press Releases

RTA 408 Phase 2 Trial now enrolling at Emory University

Recruitment Notice: Call for Patients… More
Mar 17, 2015 News & Press Releases

Catrike Ends Rally to Focus on FARA

Catrike announces a focus of time and… More
Mar 17, 2015 News & Press Releases

MassBio News Patient Profile: Jean Walsh

Thirty years ago, Jean Walsh was… More
Feb 25, 2015 News & Press Releases

University of Portland graduate Sam Bridgman to speak at fundraiser for rare disease

A dinner and live auction to fund… More
Feb 17, 2015 News & Press Releases

State Government, Pharmaceutical Industry, and Patient Community partner together

pdf/news/2015/PressRelease02172015.pdf More
Feb 13, 2015 News & Press Releases

Horizon Pharma plc Submits Investigational New Drug Application for ACTIMMUNE(R) in the Treatment of Friedreich's Ataxia

DUBLIN, IRELAND -- (Marketwired) --… More
Feb 11, 2015 News & Press Releases

Voyager Therapeutics & Genzyme Announce Major Strategic Collaboration

pdf/news/2015/Genz_Voy%20PR%20Final%202.… More
Feb 10, 2015 News & Press Releases

Dr. Randy Feldman of Feldman Orthodontics Honored as a Tampa Bay Lightning Community Hero

TAMPA, FL, February 09, 2015… More
Feb 05, 2015 News & Press Releases

Move Your Way for Rare Disease Day 2015

Partnering with the National… More
Feb 03, 2015 News & Press Releases

Developing a new tool to measure how nerves are affected in FA

Newcastle University Tyne, United… More
Jan 30, 2015 News & Press Releases

Reata Enrolls First Patient in the MOXIe Study, a Phase 2/3 Study Examining RTA 408 in Friedreich's Ataxia Patients

IRVING, TX--(Marketwired - January 29,… More
Jan 26, 2015 News & Press Releases

Phase 2 Trial with RTA 408 now enrolling at University of Florida

Recruitment Notice:… More
Jan 15, 2015 News & Press Releases

Choosing Happiness

Meet Kaelan Carlson, a 10-year-old… More
Jan 13, 2015 News & Press Releases

Horizon Pharma announces plans for Phase 3 trial of Acctimmune in Friedreich's ataxia

SAN FRANCISCO, CA -- (Marketwired) --… More
Jan 09, 2015 News & Press Releases

7th Annual CHOP FA Symposium Video Now Available

7th Annual CHOP FA Symposium Video Now… More
Dec 31, 2014 News & Press Releases

FARA Funds Four New Research Grants

pdf/news/2014/news12312014.pdf More
Dec 18, 2014 News & Press Releases

The Advocate - Winter 2014-2015

FARAnewsletterDec2014.pdf More
Dec 01, 2014 News & Press Releases

Consensus Clinical Management Guidelines for Friedreich Ataxia

https://frdaguidelines.org/ More
Dec 01, 2014 News & Press Releases

Study of Cardiomyopathy in FA Patients

https://www.curefa.org/pdf/news/2014/Wei… More
Nov 24, 2014 News & Press Releases

Restaurateur Hosts NB 'Hearts of Hope' Benefit Shopping Night

Local icon, author and restaurant owner… More
Nov 19, 2014 News & Press Releases

Phase 2 Trial with RTA 408 now enrolling at CHOP Recruitment Notice:

https://www.curefa.org/pdf/news/2014/RTA… More
Nov 14, 2014 News & Press Releases

'Nutcracker Tea' to fight a rare disease

CHERRY HILL The Daughters of Penelope… More
Oct 07, 2014 News & Press Releases

Kyle Bryant is Gearing Up for Ride Ataxia 2014

Sunday, October 12th, the 6th annual… More
Oct 03, 2014 News & Press Releases

Family making a difference in Friedrich's Ataxia Research

LEMOYNE, Pa. -- It's a rare disease,… More
Sep 30, 2014 News & Press Releases

Reata Announces the Initiation of Phase 2 Studies Examining RTA 408 for the Treatment of Friedreich's Ataxia and Mitochondrial Myopathies

IRVING, TX, Sep 30, 2014 (Marketwired… More
Sep 09, 2014 News & Press Releases

"Tremendous progress" in race against Friedreich's ataxia highlighted at USF-FARA scientific symposium

"What a difference a year makes" was a… More
Sep 09, 2014 News & Press Releases

Albert Richard awarded 'Young Champion'

Eight local "young champions" spent… More
Aug 21, 2014 News & Press Releases

"We're not alone anymore": 5th Race for Matt and Grace to support fight against Friedreich's ataxia

Friedreich’s ataxia (FA) is a… More
Aug 12, 2014 News & Press Releases

Chondrial Therapeutics, LLC launched to advance protein replacement for FA Business story:

Advocacy story: More patients help drug… More
Jul 31, 2014 News & Press Releases

A Tampa Bay Rays Gameday Experience with Gavin Lambert

Video: A Tampa Bay Rays Gameday… More
Jul 31, 2014 News & Press Releases

Kyle Bryant receives first-ever AANEM Public Recognition Award

/pdf/news/2014/2014PublicServiceAward-Ky… More
Jul 30, 2014 News & Press Releases

Your invitation to the 7th Annual CHOP FA Symposium on Oct 13th, 2014

pdf/news/2014/2014CHOP-FAsymposium.pdf More
Jul 19, 2014 News & Press Releases

Ride Ataxia; to raise awareness of debilitating disease

It’s a debilitating disease that robs… More
Jul 18, 2014 News & Press Releases

2014 Ride Ataxia helping to make a difference

2014 Ride Ataxia helping to make a… More
Jul 16, 2014 News & Press Releases

International effort to fill gap in Friedreich's ataxia research

FARA Press Release:… More
Jul 07, 2014 News & Press Releases

The Advocate - Summer 2014

pdf/news/2014/FARAnewsletterJul2014.pdf More
Jul 01, 2014 News & Press Releases

Attn Young Investigators - Call for Abstracts 7th Annual Friedreich's Ataxia Symposium

pdf/news/2014/FASymposiumCallForAbstract… More
Jul 01, 2014 News & Press Releases

Abstract Submission Form

pdf/news/2014/2014AbstractSubmissionForm… More
Jun 03, 2014 News & Press Releases

REGENX has granted Voyager a non-exclusive worldwide license

pdf/news/2014/Voyager_02.11.14.pdf More
Jun 02, 2014 News & Press Releases

Ride raises money for rare disease research

Ride raises money for rare disease… More
May 30, 2014 News & Press Releases

Alameda: Family riding to save lives, raise awareness of rare disease

An Alameda family with two children… More
Apr 30, 2014 News & Press Releases

Join Us in the "We Believe" Initiative for FA Awareness Day

pdf/news/2014/WeBelieve2014FAAD.pdf More
Apr 30, 2014 News & Press Releases

REGENX Biosciences Enters Into License Agreement With AAVLife for Development of Treatments for Friedreich's Ataxia Using NAV(R) Vectors

Read More: REGENX Biosciences Enters… More
Apr 24, 2014 News & Press Releases

"Portraits of Courage" to Honor Spirit of Patients and Families at Annual NORD Gala

With a Portraits of Courage theme, NORD… More
Apr 15, 2014 News & Press Releases

AAVLife start-up company to advance cardiac gene therapy in FA announces Series A funding

Bluebird Bio is a symbol, in a way, of… More
Apr 06, 2014 News & Press Releases

International collaboration advances gene therapy for Friedreich's ataxia

Related Links: Nature Medicine article… More
Mar 21, 2014 News & Press Releases

Anna Gordon raises awareness for the upcoming Masquerade Ball to benefit FARA

Read More: Anna Gordon raises awareness… More
Mar 17, 2014 News & Press Releases

FDA Grants Fast Track Status to Edison Pharmaceuticals' EPI-743 for Friedreich's Ataxia

FARA Press Release:… More
Mar 17, 2014 News & Press Releases

Edison Pharma Press Release

FARA Press Release:… More
Mar 14, 2014 News & Press Releases

Woman Battles Genetic Condition on the Road

A genetic condition isn't keeping one… More
Mar 11, 2014 News & Press Releases

Determination and focus help two cousins achieve their dreams

Olympian Molly Schaus and Friedreich's… More
Mar 06, 2014 News & Press Releases

$3.25 Million Gift Creates Penn Medicine/CHOP Friedreich's Ataxia Center of Excellence Media Coverage

Penn Medicine and Children’s Hospital… More
Mar 04, 2014 News & Press Releases

Gavin Lambert meets John Isner at Ace for a Cure

Courtesy of Tennis View Magazine… More
Feb 12, 2014 News & Press Releases

Voyager Therapeutics, a new gene therapy company focused on CNS diseases, is launched.

FARA Press Release:… More
Feb 08, 2014 News & Press Releases

Second Annual Move YOUR Way for Rare Disease Day

Join FARA for a Virtual Event Through… More
Feb 07, 2014 News & Press Releases

Local College Student Battling Rare Disease Goes from Sidelines to Cyclist

Read More: Local College Student… More
Feb 04, 2014 News & Press Releases

FDA Grants Edison Pharmaceuticals' EPI-743 Orphan Status for Friedreich's Ataxia

Read More: Edison Pharma Press Release… More
Jan 31, 2014 News & Press Releases

Edison Pharmaceuticals, Inc. announces a strategic alliance with Dainippon Sumitomo Pharma Co., Ltd.

pdf/news/2014/1391163032EdisonDSPFinalJa… More
Jan 29, 2014 News & Press Releases

Sixth-Grader Grace Haupt Navigates Life with Spirit and Drive

Grace Haupt didn’t want to go to the… More
Jan 28, 2014 News & Press Releases

International patient advocates partner to fund Spanish gene-therapy project to treat Friedreich's ataxia

IRB Barcelona Press Release FARA Press… More
Jan 21, 2014 News & Press Releases

FARA has 2 Tickets to the Super Bowl for Auction

pdf/news/2014/SuperBowl-2014.pdf More
Jan 21, 2014 News & Press Releases

Repligen Corporation Announced BioMarin Pharmaceutical Acquired Assets in HDAC Inhibitor Program

Repligen Press Release BioMarin Press… More
Jan 16, 2014 News & Press Releases

Safety and Pharmacology Study of VP 20629 in Adults With FA

This study is actively enrolling and… More
Jan 15, 2014 News & Press Releases

Amanda - Meeting Justin Timberlake

An Alberta woman battling a rare… More
Jan 13, 2014 News & Press Releases

Predictive Testing in FA Survey - Invitation for FA patients and their immediate family members

http://curefa.org/pdf/news/2014/ArcadiaS… More
Jan 11, 2014 News & Press Releases

Sixth Annual Friedreich's Ataxia Symposium at CHOP Recorded October 14, 2013

Sixth Annual Friedreich's Ataxia… More
Jan 02, 2014 News & Press Releases

The Tampa Bay Lightning honors Paul and Suzanne Avery as Lightning Community Heroes of the year

The Tampa Bay Lightning honors Paul and… More
Jan 01, 2014 News & Press Releases

Agilis Biotherapeutics Completes $8 Million Financing to Develop DNA based Therapeutics

pdf/news/2014/Agilis-Series%20A%20DRAFT%… More
Dec 17, 2013 News & Press Releases

The Advocate Winter 2013 - 2014

New Newsletter Available! More
Dec 05, 2013 News & Press Releases

Friedreich’s Ataxia Research Alliance honors Clear Channel Outdoor as Media Partner of the Year

December 5, 2013 — The Friedreich’s… More
Dec 05, 2013 News & Press Releases

Friedreich’s Ataxia Research Alliance recognizes the Tampa Bay Lightning as Partner of the Year

December 5, 2013 — The Friedreich’s… More
Nov 21, 2013 News & Press Releases

Ace For A Cure with John Isner raising funds for FA research

Ace For A Cure with John Isner raising… More
Nov 19, 2013 News & Press Releases

North Branford shopping event Dec 7th to fight rare disease

North Branford shopping event Dec 7th… More
Nov 06, 2013 News & Press Releases

Coming Together for a Cure - 8th Annual Stephanie's Hope Holiday Boutique

Coming Together for a Cure - 8th Annual… More
Nov 05, 2013 News & Press Releases

FARA earns the highest rating (4 Stars) from Charity Navigator for the 4th consecutive year!

FARA earns the highest rating (4 Stars)… More
Oct 29, 2013 News & Press Releases

USF is currently recruiting FA patients for a study of EPI-743 in Friedreich's Ataxia Point Mutations

USF is currently recruiting FA patients… More
Oct 18, 2013 News & Press Releases

N. Ga. family opens up about efforts to battle rare disease

N. Ga. family opens up about efforts to… More
Oct 13, 2013 News & Press Releases

6th Grader's Outlook On Life Inspires Those Around Her

6th Grader's Outlook On Life Inspires… More
Oct 09, 2013 News & Press Releases

Athelete's Diagnosis Inspires Multi-Million Dollar Fundraising Ride

Athelete's Diagnosis Inspires… More
Oct 09, 2013 News & Press Releases

Pioneering Research of a Rare Neurological Disorder

Pioneering Research of a Rare… More
Sep 30, 2013 News & Press Releases

Dr. Robert Dean and The Lambert Family talk about Living with Friedreich's ataxia

Dr. Robert Dean and The Lambert Family… More
Sep 25, 2013 News & Press Releases

Celebrating Ataxia Awareness Day, we announce the Keith Michael Andrus Cardiac Research Grant

pdf/news/2013/KMAresearchGrant2013.pdf More
Sep 23, 2013 News & Press Releases

'If I can affect change in other people’s live ... that can be really powerful'

When you first meet Sam Bridgman, you… More
Sep 23, 2013 News & Press Releases

Dozens ride to raise awareness about rare neuro-muscular disease

PORTLAND, OR (KPTV) - There's no… More
Sep 11, 2013 News & Press Releases

Sam Bridgman pedaling for a cure in Ride Ataxia Portland

PORTLAND, OR (KPTV) - Sam Bridgman may… More
Sep 10, 2013 News & Press Releases

Mapping the anatomical and functional connectivity of the Central Nervous System in Friedreich’s Ataxia using Magnetic Resonance Imaging

Researchers at the University of… More
Sep 09, 2013 News & Press Releases

FARA Energy Ball 2013 Video

The FARA Energy Ball is the largest… More
Sep 08, 2013 News & Press Releases

Tampa at center of research to cure rare disease

Tampa, Florida - It's a disease that… More
Sep 05, 2013 News & Press Releases

Clinical Research at USF may develop treatment for difficult neuromuscular disease

TAMPA - Lealan LaRoche is in the middle… More
Aug 15, 2013 News & Press Releases

Recruitment Notice: Study of interferon gamma-1b (Actimmune™) for the treatment of FA at CHOP

pdf/news/2013/IFNgammaStudy082113.pdf More
Aug 15, 2013 News & Press Releases

Announcing the 6th Annual Friedreich's Ataxia Symposium at CHOP

pdf/news/2013/CHOP-Symposium-13.pdf More
Aug 14, 2013 News & Press Releases

Announcing the FARA/USF Health Science Symposium

For the second year in a row, FARA and… More
Aug 14, 2013 News & Press Releases

FARA recently met with Senator Bob Casey to give the patient perspective on NIH budget sequestration

Last week FARA was notified of an… More
Jul 31, 2013 News & Press Releases

Clinical Trial Announcment: Call for Patients with FA Phase I Trial with VP-20629 at CHOP

pdf/news/2013/VP20629ClinicalTrial.pdf More
Jul 18, 2013 News & Press Releases

Prominent Friedreich’s ataxia spokesperson and advocate to participate in University of Minnesota study

pdf/news/2013/news071813.pdf More
Jul 17, 2013 News & Press Releases

New Newsletter Available: The Advocate Summer 2013

pdf/newsletters/FARAnewsletterSummer2013… More
Jul 17, 2013 News & Press Releases

Villa Park teen rides to raise money for her rare disorder

Friedreich's ataxia forces Nicole… More
Jul 13, 2013 News & Press Releases

Have Wheels, Will Ride: Teenage Girl Pedals After Medical Breakthrough

Seventeen-year-old Emily Young—who is… More
Jul 09, 2013 News & Press Releases

Interview with Kristin Jones Winner of 10 mile Swim in Vermont for Team Ryan and Owen Jones

From Juneau, Alaska, Kristin Jones… More
Jul 07, 2013 News & Press Releases

Emily Young and Ride Ataxia on ABC 7 Chicago

CHICAGO -- On Sunday, July 21, 2013, a… More
Jun 27, 2013 News & Press Releases

GCMS senior to ride for cure in Channahon

CHANNAHON — Emily Young, a senior this… More
Jun 14, 2013 News & Press Releases

Cody Brunette tops Swim Around Key West

The Florida ocean currents were no… More
Jun 11, 2013 News & Press Releases

FARA Webinar – FA Treatment Pipeline Update Tuesday June 18th 12:00pm EST

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Jun 03, 2013 News & Press Releases

Va. Beach event targets neuro-muscular disorder

VIRGINIA BEACH Several activities will… More
May 29, 2013 News & Press Releases

Kyle Bryant From Ride Ataxia

Cody stark joined Kyle Bryant, a local… More
May 18, 2013 News & Press Releases

Poem by Christian Maugee: A Disease Unlike the Rest

pdf/news/2013/ADiseaseUnliketheRest.pdf More
May 18, 2013 News & Press Releases

Friedreich's Ataxia Awareness Day is Saturday, May 18th 2013

pdf/news/2013/FARA-FAAwarenessDay2013.pd… More
May 17, 2013 News & Press Releases

Swimming for a cause, swimming for family

Kristin Jones has always been able to… More
May 14, 2013 News & Press Releases

Sam Bridgman Stands From Wheelchair, Walks Across Stage At College Graduation

"Impossible is nothing" is Sam… More
May 01, 2013 News & Press Releases

Join Us in "A New FA" Initiative for FA Awareness Day

pdf/news/2013/A-New-FA-2013.pdf More
May 01, 2013 News & Press Releases

Fundraising for Friedreich’s Ataxia: Concert for a Cure was a Huge Success

In November, Sara Ferrarone, of… More
May 01, 2013 News & Press Releases

Rochester Undergrads Raise $20K for Rare Disease Research

University of Rochester student Sarah… More
Apr 30, 2013 News & Press Releases

Race for Christina Will Support Friedreich's Ataxia Research

Local resident Catherine Logan is… More
Apr 26, 2013 News & Press Releases

Glen Burnie woman rides through adversity to strength

Lauren Williams and her father unbox… More
Apr 25, 2013 News & Press Releases

Sam Bridgman: The University of Portland student faces new challenges after college

Like many college seniors, University… More
Apr 11, 2013 News & Press Releases

Save The Date! Oct 14, 2013 - 6th Annual FA Symposium

pdf/news/2013/FASTD.pdf More
Apr 04, 2013 News & Press Releases

Students lead awareness campaign for rare genetic disease, YellowJackets contribute

A semester-long effort to raise… More
Apr 04, 2013 News & Press Releases

A study at the University of Minnesota is looking for individuals who have been recently diagnosed with Friedreich’s ataxia

pdf/news/2013/FlyerFreidreichSpinalCordN… More
Mar 28, 2013 News & Press Releases

Annual run spreads awareness for rare and lethal disease

BAKERSFIELD, Calif. - This weekend you… More
Mar 12, 2013 News & Press Releases

Just Like Me: The Taylor Family Foundation

During our half-hour special, "Just… More
Mar 10, 2013 News & Press Releases

Young Woman With Rare Disease Cycles through Denton

As a 20-year-old, Murphy resident Emily… More
Mar 10, 2013 News & Press Releases

Rider Not Letting Ataxia Stop Race For Awareness

DALLAS (CBSDFW.COM) – Emily Penn is on… More
Feb 28, 2013 News & Press Releases

Rare Diseases Touch Lives

FOX 13 News More
Feb 24, 2013 News & Press Releases

Pasco family deals with rare disease as community rallies around seven-year-old

What's this -- an impromptu line dance… More
Feb 18, 2013 News & Press Releases

Announcing "Move YOUR Way" Initiative for Rare Disease Day

pdf/news/2013/PressReleaseMYWRD2013.pdf More
Feb 07, 2013 News & Press Releases

Altadena mother swaps wheelchair for bicycle to ride for neuromuscular disorder

On Saturday, Altadena’s Beth Bax will… More
Feb 07, 2013 News & Press Releases

Team FARA's Beth Bax raises awareness for FA in the LA area

Sport has always brought people… More
Feb 06, 2013 News & Press Releases

'Cramming 72 years into 27': Book by late Fremont man offers inspiration

FREMONT -- Diagnosed with a… More
Feb 06, 2013 News & Press Releases

EPI-743 Clinical Trial begins at UCLA and CHOP

pdf/news/2013/EPI-743trialUCLA.pdf… More
Feb 05, 2013 News & Press Releases

FARA Spokesperson, Kyle Bryant, was honored at the Tampa Bay Lightning game

FARA Spokesperson, Kyle Bryant, was… More
Feb 03, 2013 News & Press Releases

Altadena and Santa Clarita Women Unite In Fight to Cure Friedreich’s Ataxia

The 15th annual Tour de Palm Springs, a… More
Jan 30, 2013 News & Press Releases

Industry lends muscle to genetic disease

Host Sydney has created an awareness… More
Jan 21, 2013 News & Press Releases

Tennis Channel coverage of Fara's Ace for a Cure w/ John Isner

Dave "KOZ" Kozlowski attended the Fara… More
Jan 09, 2013 News & Press Releases

STATegics, Inc. Announces a New Grant from Friedreich’s Ataxia Research Alliance

Menlo Park, California -- STATegics,… More
Jan 07, 2013 News & Press Releases

FDA Recognizes 30 Heroes Changing Lives of Those with Rare Diseases - FARA President and Co-Founder to be Honored

pdf/news/2013/PressRelease01-07-13.pdf More
Jan 02, 2013 News & Press Releases

Counting her Blessings: Islander lives with Friedreich's ataxia

With the start of the new year, it’s… More
Jan 02, 2013 News & Press Releases

USF Ataxia Research Center announces enrollment for a phase 2B EPI-743 trial in FA patients

news/2013/USFrecruitmentNotice01-02-13.p… More
Dec 18, 2012 News & Press Releases

Medical Mysteries: Cerebral palsy proves not to be the cause of boy’s decline

For the first decade of his life, every… More
Dec 13, 2012 News & Press Releases

John Isner & Kyle Bryant Discuss the Value of Determination & Perseverance

Pro-Tennis Athlete and winner of the… More
Dec 11, 2012 News & Press Releases

Living the Decision: A Pocket Guide to Cramming 72 years of living into 27.

"All we have to decide is what to do… More
Nov 20, 2012 News & Press Releases

Genetic Counseling Students Volunteer at Ride Ataxia Benefit

Students from Arcadia University’s… More
Nov 15, 2012 News & Press Releases

EPI-743 Phase 2B Friedreich Ataxia clinical trial to be initiated

pdf/news/2012/EPI-743_Phase2B_FAclinical… More
Nov 12, 2012 News & Press Releases

FARA leads the Neuromuscular Community in Important FDA Recommendation

pdf/news/2012/FDApublicComments11-01-12.… More
Nov 05, 2012 News & Press Releases

300 take part in Hayden's Hope event

MASON CITY — Hundreds of people turned… More
Oct 08, 2012 News & Press Releases

Fundraiser scheduled for Hayden Despenas

MASON CITY — An event to help raise… More
Sep 13, 2012 News & Press Releases

Free concert in Queensbury to draw attention to rare disease

David McDonnell of Moreau said he never… More
Sep 13, 2012 News & Press Releases

Amy Scherzer's Diary: Partying at the RNC, FARA Energy Ball

Friendships fueled the FARA Energy Ball… More
Sep 11, 2012 News & Press Releases

2012 FARA Energy Ball Video

This video introduces you to some of… More
Sep 10, 2012 News & Press Releases

USF Health to lead new Friedreich's ataxia study

USF Health will be the lead site for a… More
Sep 05, 2012 News & Press Releases

Trike brings thrilling rides for boy with rare disease

Being a normal kid doesn't always come… More
Aug 02, 2012 News & Press Releases

James Blake & Kyle Bryant - Confidence in FA Research

Pro-tennis athlete, James Blake and… More
Aug 01, 2012 News & Press Releases

Update your FARA Patient Registry Account Today!

pdf/news/2012/FARAPatientRegistry08-01-1… More
Jul 17, 2012 News & Press Releases

FA Symposium at Children's Hospital of Philadelphia Save The Date - Oct 8, 2012

pdf/news/2012/2012ChopSymposium.pdf More
Jun 26, 2012 News & Press Releases

Interview with Kyle Bryant about Ride Ataxia and the Energy Ball

An inspiring young man diagnosed with a… More
May 18, 2012 News & Press Releases

Friedreich's Ataxia Awareness Day is Saturday, May 19th- Meet a Few of the Faces of Friedreich’s Ataxia

pdf/news/2012/PressRelease05-18-12.pdf More
May 14, 2012 News & Press Releases

St. Catherine’s Annual Jog-A-Thon Supports Research for Friedrich’s Ataxia

St. Catherine’s Academy, a Catholic… More
May 13, 2012 News & Press Releases

Impossible is Nothing.

The story of Sam Bridgman, a student at… More
Apr 30, 2012 News & Press Releases

Junior receives award named in memory of advocate for disabled

Jamie Albright, who is researching… More
Apr 30, 2012 News & Press Releases

Family fights disease through fundraising and Ride Ataxia

At 5 years old, Izzy Penston couldn’t… More
Mar 25, 2012 News & Press Releases

North Texas Bike-A-Thon For Neuromuscular Disease

NORTH TEXAS (CBSDFW.COM) – Young Denton… More
Mar 25, 2012 News & Press Releases

Denton bike riders aim to beat rare disease

DENTON Earlier this week, we introduced… More
Mar 22, 2012 News & Press Releases

Teen's rare disease disconnects brain from nervous system

DALLAS One year ago, 13-year-old… More
Mar 15, 2012 News & Press Releases

FARA Press Release - Partnership and Collaboration take promising therapy

pdf/news/2012/PressRelease03-15-12.pdf More
Mar 11, 2012 News & Press Releases

Positive Pakistani: Steel wheels

Struck by a crippling disease at 17,… More
Mar 08, 2012 News & Press Releases

Research on Hearing loss in FA - Tuesday March 27th 7:00pm EST

pdf/news/2012/FARA-HearingLossWebinar.pd… More
Mar 02, 2012 News & Press Releases

Speaker challenges students to define themselves

Motivational speaker Sean Baumstark… More
Feb 28, 2012 News & Press Releases

Edison Girl's Rare Disease in Spotlight Feb 29

Alameda family is on a mission to raise… More
Jan 19, 2012 News & Press Releases

Perrysburg teenager does not let disease hold him back

The ride was a little jerky at first,… More
Dec 08, 2011 News & Press Releases

Help support the NIH budget Write Congress to express your concerns

pdf/news/2011/NIHfundingLetter.pdf More
Nov 19, 2011 News & Press Releases

Gabe Ford takes anti-bullying message to Thanksgiving Day parade

Anyone following the activities and… More
Nov 15, 2011 News & Press Releases

Good news for all patient families!

pdf/news/2011/AllianceRelease11-15-11.pd… More
Nov 01, 2011 News & Press Releases

Reason to run

Man to raise awareness about cousins'… More
Oct 26, 2011 News & Press Releases

Ride Ataxia announces 2011 AAI Grant Recipients

pdf/news/2011/PressRelease2011AAI.pdf More
Sep 30, 2011 News & Press Releases

ViroPharma licenses rights from Intellect Neurosciences for product candidate for Friedreich's Ataxia

pdf/news/2011/OX1License.pdf More
Sep 28, 2011 News & Press Releases

Fighting the Odds

The odds of winning the California Mega… More
Sep 21, 2011 News & Press Releases

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

There’s an old expression, "You have to… More
Sep 15, 2011 News & Press Releases

Race for Grace Could Use Your Support

Organizers of second annual event seek… More
Sep 05, 2011 News & Press Releases

Community Day to Cure FA - Walk and Picnic Sept. 11

NORTH BRANFORD - Mary Caruso and her… More
Sep 01, 2011 News & Press Releases

Still Dancing by Gabrielle Ford

STILL DANCING is a rallying cry for… More
Aug 30, 2011 News & Press Releases

Fara Energy Ball 2011

The 2011 Energy Ball took place on… More
Aug 04, 2011 News & Press Releases

Positively Tampa Bay: FARA Energy Ball

ABC Action News speaks with Ron Bartek… More
Aug 02, 2011 News & Press Releases

STATegics, Inc. announces a grant from FARA to Support it's Program

pdf/news/2011/STATegics_Press_Release_FA… More
Jul 18, 2011 News & Press Releases

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

pdf/news/2011/2011FAsymposium.pdf More
Jul 17, 2011 News & Press Releases

Gathering lets people with disease know they're not alone

NEW DURHAM TOWNSHIP — Paula and Tom… More
Jul 13, 2011 News & Press Releases

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

pdf/news/2011/FARA-RepliGen-Webinar.pdf More
Jun 19, 2011 News & Press Releases

Determined to fight it

His girl's life at risk from a rare… More
Jun 16, 2011 News & Press Releases

FARA President's Letter

pdf/news/2011/FARAPresLetter6-16-2011.pd… More
Jun 11, 2011 News & Press Releases

EPI-A0001 Improves Neurological Outcome Endpoint in 28-Day Phase 2A Double-Blind Placebo-Controlled Clinical Trial in Friedreich’s Ataxia

pdf/news/2011/A0001DrugTrial.pdf More
Jun 10, 2011 News & Press Releases

FARA Grant Funding Opportunities 2011

pdf/news/2011/FARAGrantFundingOps.pdf More
Jun 08, 2011 News & Press Releases

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

pdf/news/2011/FDAOrphanDrugDesignationEP… More
Jun 01, 2011 News & Press Releases

Vote for The Ataxian documentary in The Pepsi Refresh Project

Vote for The Ataxian documentary in The… More
May 16, 2011 News & Press Releases

Strasbourg FA Scientific Meeting Conference Photos and Thanks

pdf/news/2011/SciConference2011Photos.pd… More
May 05, 2011 News & Press Releases

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

Liestal, Switzerland, May 5, 2011 -… More
May 01, 2011 News & Press Releases

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

pdf/news/2011/2011IntScientificConferenc… More
Apr 12, 2011 News & Press Releases

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

pdf/news/2011/PR-OrphanDrugApplication.p… More
Mar 30, 2011 News & Press Releases

Tiffany's Friends fundraiser in the News

Tiffany Gambill discusses Friedreich's… More
Mar 07, 2011 News & Press Releases

Sunshine Ranches Superbowl Party Raises Thousands

pdf/news/2011/SRsuperbowlParty.pdf More
Feb 26, 2011 News & Press Releases

Rare Diseases Take Spotlight in Annual Event

pdf/news/2011/RareDiseaseDay_0211.pdf More
Feb 19, 2011 News & Press Releases

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

pdf/news/2011/PressRelease02-19-2011.pdf More
Feb 04, 2011 News & Press Releases

FARA receives a 4 star rating from Charity Navigator

pdf/news/2011/NewsCharityNavigator.pdf More
Dec 24, 2010 News & Press Releases

21-year-old doesn't let disease get in his way

When most think of their future, it… More
Nov 22, 2010 News & Press Releases

Neurology Today movie review: The Cake Eaters

I don't really have a lot of time to… More
Oct 14, 2010 News & Press Releases

FARA is Key Participant in Government Report on Accelerating Rare Disease Research

pdf/news/2010/FARAinGovReport-Accelerati… More
Oct 13, 2010 News & Press Releases

Wiffle Ball tournament fights disease

Local athletes will have the rare… More
Oct 13, 2010 News & Press Releases

DIA/FDA Orphan Drug Designation Workshop Nov 4-5, 2010

View the PDF More
Sep 08, 2010 News & Press Releases

4th International Friedreich’s Ataxia Scientific Conference

pdf/news/2010/IC4SaveTheDate.pdf More
Sep 03, 2010 News & Press Releases

Fitchburg man says disease won't sidetrack active lifestyle

FITCHBURG -- When at 10 years old Nick… More
Aug 30, 2010 News & Press Releases

Symposium participants optimistic about finding first treatment for Friedreich's ataxia

With all the significant scientific… More
Aug 28, 2010 News & Press Releases

The FARA Energy Ball on Channel 8 in Tampa

The second annual FARA Energy Ball took… More
Aug 26, 2010 News & Press Releases

Interview with Studio 10 - Kyle Bryant and Ron Bartek discuss the FARA Energy Ball

This was a live promo spot that ran in… More
Aug 10, 2010 News & Press Releases

The Friedreich's Ataxia Research Alliance Announces the 2010 Ataxian Athlete Initiative Grant Recipients

pdf/news/2010/2010AAIgrantRecipients.pdf More
Aug 03, 2010 News & Press Releases

Advances in Ataxia Research Focus of USF-FARA Symposium

pdf/news/2010/CultivatingCure_AtaxiaSymp… More
Aug 02, 2010 News & Press Releases

Repligen Receives Additional Research Grants to Support Development of HDAC Inhibitors for Friedreich’s Ataxia and Huntington’s Disease

pdf/news/2010/HDAC Inhibitor Grants… More
Aug 01, 2010 News & Press Releases

Local hikers take to High Peak for FA

It’s hard to miss Benjamin Wetherby.… More
Aug 01, 2010 News & Press Releases

Friedreich's ataxia has no cure, but researchers are working on answers

When Colleen O’Neal was selected as… More
Jul 23, 2010 News & Press Releases

The Alliance’s 'member spotlight' is currently shining on …

FARA ADVOCATES FOR PATIENTS … FARA (the… More
Jul 13, 2010 News & Press Releases

Third Annual Friedreich's Ataxia Symposium

pdf/news/2010/Symposium2010.pdf More
Jul 06, 2010 News & Press Releases

FARA Annual Report 2009

pdf/news/2010/2009AnnualReport.pdf More
Jun 25, 2010 News & Press Releases

Student Crowned Miss Wheelchair NH

New Hampshire is the 27th state to… More
Jun 24, 2010 News & Press Releases

Kyle Bryant Friedreich’s Ataxia Race Across America RAAM

You are about to pedal your trike… More
Jun 24, 2010 News & Press Releases

Me, My Bike, and I - Notes from the RAAM Finish Line

I have been off the bike for MUCH… More
Jun 10, 2010 News & Press Releases

FARA hosts Friedreich's ataxia Cardiac Summit on June 11th in Philadelphia

pdf/news/2010/CardiacSummitAnnouncement.… More
Jun 07, 2010 News & Press Releases

The Ride Of His Life - Kyle Bryant in Sactown Magazine

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Jun 04, 2010 News & Press Releases

Team FARA - Race Across America - on channel 10 news

We shot this story with News 10's… More
Jun 03, 2010 News & Press Releases

The 2010 Kyle Bryant Translational Research Award and The Bronya J. Keats Award for International Collaboration in Research on Friedreich's Ataxia

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May 28, 2010 News & Press Releases

Pharma's Orphans - FARA in Pharmaceutical Executives Magazine

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May 24, 2010 News & Press Releases

Ride Ataxia Kicked off the 2010 ride series in Tampa - and spoke on NBC Daytime about Ride Ataxia and FARA

Ride Ataxia Kicked off the 2010 ride… More
May 14, 2010 News & Press Releases

Events Across the United States Mark Friedreich's Ataxia Awareness Day

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May 06, 2010 News & Press Releases

FARA Congratulates Nygel Lenz on Receiving the 2010 Dean's Award from the University of South Florida

At the University of South Florida… More
Apr 12, 2010 News & Press Releases

Clinical Trial Update - Double-Blind, Randomized, Placebo-Controlled Pilot Study of Varenicline in the Treatment of FA

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Mar 29, 2010 News & Press Releases

Billy Tauzin, President and CEO of PhRMA Address at the PhRMA Meeting on March 18, 2010

FARA is proud to share the video of the… More
Mar 26, 2010 News & Press Releases

Teens experience life in wheelchairs

Students wheel themselves to class in… More
Mar 18, 2010 News & Press Releases

PhRMA Honors Patient Advocates Ron and Raychel Bartek

WASHINGTON, March 18… More
Mar 18, 2010 News & Press Releases

Demystifying Medicine

Featuring Drs. Tracy Rouault and… More
Mar 18, 2010 News & Press Releases

FARA Congratulates Melissa Phares, ChairScholar Award Winner

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Mar 10, 2010 News & Press Releases

FARA Announces the 2010 Ataxian Athlete Initiative

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Feb 26, 2010 News & Press Releases

FDA Expands Commitment to Patients with Rare Diseases

Expanding on its commitment to… More
Feb 15, 2010 News & Press Releases

FARA receives Quality of Life grant from Christopher and Dana Reeve Foundation

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Feb 15, 2010 News & Press Releases

Ride Ataxia NorCal Press Release

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Feb 12, 2010 News & Press Releases

The Outback Steakhouse Pro-Am Teams Up with Ride Ataxia Tampa Bay

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Feb 11, 2010 News & Press Releases

Neurology Now - Friedreich's Ataxia

This article just came out in Neurology… More
Feb 07, 2010 News & Press Releases

Classmate's disorder leads to school effort

Alec Gaston usually takes his time… More
Feb 05, 2010 News & Press Releases

Repligen Corporation F3Q10 (Qtr End 12/31/09) Earnings Call Transcript

Thank you and good morning. The purpose… More
Feb 04, 2010 News & Press Releases

Team FARA Races Across America to Raise Awareness for Friedreich's ataxia

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Feb 01, 2010 News & Press Releases

Introducing the New FARA Logo

Introducing the new FARA logo Dear FARA… More
Jan 23, 2010 News & Press Releases

Keith Michael Andrus: 12/21/1985 - 01/22/2010

We, at the Friedreich's Ataxia Research… More
Jan 11, 2010 News & Press Releases

Penwest Announces Initiation of Phase IIa Clinical Trial of A0001 in Patients with Friedreich's Ataxia

Patterson, NY – Penwest Pharmaceuticals… More
Jan 04, 2010 News & Press Releases

FARA offered access to National Scholarship Program for Students with Disabilities

Available to students in every state in… More
Nov 05, 2009 News & Press Releases

Wasco Students Take Steps For A Cure

Students in Wasco laced up their… More
Oct 14, 2009 News & Press Releases

Second Annual Friedreich's Ataxia Research Symposium

Read More: Second Annual Friedreich's… More
Oct 13, 2009 News & Press Releases

$360,000 in Kyle Bryant Translational Research Awards Announced Today

The National Ataxia Foundation (NAF)… More
Oct 05, 2009 News & Press Releases

Stars glow in Branford for Friedreich's event

BRANFORD -- It wasn't quite the Tribeca… More
Sep 25, 2009 News & Press Releases

FARA’s First Friends & Allies Award Presented to the Executive & Creative Team of The Cake Eaters

The Friedreich’s Ataxia Research… More
Sep 24, 2009 News & Press Releases

Repligen Announces Identification of Drug Target for Friedreich’s Ataxia

WALTHAM, MA – Repligen Corporation… More
Sep 24, 2009 News & Press Releases

Outback Steakhouse and Local Non-Profit Ride for a Cure, support clinic at Children's Hospital of Philadelphia

Philadelphia, PA. — Friedreich’ s… More
Sep 24, 2009 News & Press Releases

Mayor of the City of Tampa Proclaims September 25 - Ataxia Awareness Day

Ataxia advocacy groups and communities… More
Sep 09, 2009 News & Press Releases

Family united as kids work to find cure for sister's disease

As the youngest of four kids in this… More
Aug 23, 2009 News & Press Releases

Forrest Sawyer adds his Voice to Non-Profit Cause

Santa Barbara, CA -- World-renowned,… More
Aug 18, 2009 News & Press Releases

Symposium looks toward cure for ataxias

Tampa, FL — An upcoming symposium at… More
Jul 16, 2009 News & Press Releases

Penwest Pharmaceuticals (PPCO) Announces Results of Phase Ib Trial of A0001

Penwest Pharmaceuticals Co. (Nasdaq:… More
Jun 01, 2009 News & Press Releases

2009 Kyle Bryant Translational Research Award sponsored by Ride Ataxia, the Friedreich’s Ataxia Research Alliance and the National Ataxia Foundation

The Friedreich's Ataxia Research… More
Jun 01, 2009 News & Press Releases

Fitness Together Helps Client in Wheelchair Fight Disease with Exercise

When Kerry Westfall was diagnosed at… More
May 26, 2009 News & Press Releases

New study to examine whether smoking cessation drug Varenicline may benefit adults with Friedreich’s ataxia

A drug approved for smoking cessation… More
May 19, 2009 News & Press Releases

Santhera's US Phase III IONIA Trial in Friedreich's Ataxia Misses Primary Endpoint

Data from second Phase III study… More
May 11, 2009 News & Press Releases

Research Progress Fuels Preparations for "Friedreich's Ataxia Awareness Day"

Washington, D.C. — Friedreich's ataxia… More
Mar 23, 2009 News & Press Releases

Ride Ataxia III - Portland

[row] [col class="span6"] [/col] [col… More
Mar 12, 2009 News & Press Releases

Cyclist with Rare Neuromuscular Disorder to Arrive in Seattle March 19 Completing 4 Day Cycling Journey

Seattle—Kyle Bryant and a team of 65… More
Mar 09, 2009 News & Press Releases

Cyclist with a Rare Neuromuscular Disorder to Begin Third Cycling Journey from Portland

Sacramento native Kyle Bryant and a… More
Mar 03, 2009 News & Press Releases

New Film, Directed by Mary Stuart Masterson, Features Kristen Stewart as a Young Woman with the Neuro-degenerative disease Friedreich's ataxia

The Cake Eaters, a film directed by… More
Feb 04, 2009 News & Press Releases

Fund-raiser to benefit study of boy's disease

By the time Zac Zies was in preschool… More
Jan 27, 2009 News & Press Releases

Perrysburg Junior High teachers spend day in wheelchairs

[row] [col class="span6"] [/col] [col… More
Jan 06, 2009 News & Press Releases

Cyclist with Rare Neuromuscular Disorder to Begin Third Cycling Journey

Kyle Bryant and Team Ride Ataxia are… More
Oct 31, 2008 News & Press Releases

Santhera Enrolls Last Patient in Pivotal US Phase III with SNT-MC17/Idebenone in Friedreich’s Ataxia

Liestal, Switzerland – Santhera… More
Oct 27, 2008 News & Press Releases

Social Security Announces Nationwide Launch of Compassionate Allowances

Michael J. Astrue, Commissioner of… More
Sep 12, 2008 News & Press Releases

BGC Partners, Inc. Selects the Friedreich's Ataxia Research Alliance as a Charity Day Recipient

BGC Partners, Inc. selected the… More
Sep 11, 2008 News & Press Releases

EDS, Employees garner FARA Partner of the Year honor

The young sufferers of Friedreich's… More
Sep 09, 2008 News & Press Releases

Alliance Charities, Inc. Introduces a Way to Support Causes in Tough Economic Times

It comes as no surprise as the economy… More
Aug 14, 2008 News & Press Releases

Gill Family Wins FARA a Spot on Jimmie Johnson’s Helmet of Hope To Be Worn During NASCAR's Pepsi 500 on August 31, 2008

The Gill Family of Parkville, Missouri… More
Aug 06, 2008 News & Press Releases

$250,000 in Kyle Bryant Translational Research Awards Announced Today

The National Ataxia Foundation (NAF)… More
Jul 30, 2008 News & Press Releases

CANADA- FIRST TO APPROVE DRUG IN FRIEDREICH’S ATAXIA

The Muscular Dystrophy Association… More
Jul 15, 2008 News & Press Releases

First Human Dose Initiated of Promising New Friedreich’s Ataxia Drug Highlights Effectiveness of New Public-Private Partnership Model

The Friedreich’s Ataxia Research… More
May 25, 2008 News & Press Releases

Request for Applications

Mitochondrial Therapeutic Approaches… More
May 17, 2008 News & Press Releases

Congressman Andrews FA Awareness Day Resolution

Friedreich's Ataxia Awareness Day —… More
Apr 21, 2008 News & Press Releases

The Cake Eaters

Friedrich's ataxia, a progressive… More
Apr 08, 2008 News & Press Releases

Vice - President and Chief Executive for Science

Job Title: Vice - President and Chief… More
Mar 31, 2008 News & Press Releases

'Working for Lindsay' campaign pays off

Students at Hancock Day School raised… More
Mar 27, 2008 News & Press Releases

Cyclists Bring Attention to Disabling Disease -- Friedreich's Ataxia

Cross-country cyclists ended a 650-mile… More
Mar 20, 2008 News & Press Releases

Cyclist with Rare Neuromuscular Disorder to Arrive in Las Vegas March 27 Following Cross-Country Journey

Kyle Bryant and a team of 15 cyclists… More
Mar 15, 2008 News & Press Releases

Ride Ataxia II

Ride Ataxia II is a 13 day bike trip… More
Mar 10, 2008 News & Press Releases

Cyclist with Rare Neuromuscular Disorder to Begin Second Cross-Country Journey from Sacramento

Sacramento — Sacramento native Kyle… More
Jun 26, 2007 News & Press Releases

EDS Foundation Awards $40,000 Grant to Friedreich's Ataxia Research Alliance

Plano, TX — EDS today announced that… More
Jun 18, 2007 News & Press Releases

Kyle Bryant $100,000 Award to Australian / UK Collaboration to Test Possible Friedreich's Ataxia Antioxidant Treatment in Mouse Model

The National Ataxia Foundation (NAF)… More
Jun 15, 2007 News & Press Releases

Community Champions: EDSers Help Young People Afflicted with Neuromuscular Disease

Every day is a challenge for Margaret… More
May 31, 2007 News & Press Releases

Assistance dog provides learning situation for all

Zane is friendly and happy. He… More
May 11, 2007 News & Press Releases

The Mothers and Daughters of The Cake Eaters

Having always been an optimistic… More
Apr 11, 2007 News & Press Releases

Repligen Licenses Potential Treatment for Friedreich's Ataxia from The Scripps Research Institute

Springfield, VA — Repligen Corporation… More
Jan 30, 2007 News & Press Releases

Cross-Country Cyclist with Rare Neuromuscular Disorder to Pedal through Phoenix

Kyle Bryant is in day 9 of a 2,800-mile… More
Nov 16, 2006 News & Press Releases

International Friedreich's Ataxia Conference at NIH Highlights Promising Research, Clinical Trials and the Importance of Public-Private Partnership

The Friedreich's Ataxia Research… More
Nov 14, 2006 News & Press Releases

Frank Wootten to Cycle Coast-to-Coast to Raise Awareness and Research Money for His Son's Friedreich's Ataxia

Frank Wootten of Hooksett, NH will ride… More
Aug 31, 2006 News & Press Releases

Actress Mary Stuart Masterson to Host Local Friedreich’s Ataxia Fundraiser

Branford, CT — Actress Mary Stuart… More
Aug 20, 2006 News & Press Releases

Scripps Research Team Reverses Friedreich's Ataxia Defect in Cell Culture

Newly Developed Compounds Activate… More
Aug 07, 2006 News & Press Releases

Raytheon Support Group Helps Match Service Dog Shadow with 9-Year-Old Donovan

As many WebRing readers know, WebRing… More
Jul 21, 2006 News & Press Releases

Friedrich's Ataxia Patient Raising Funds for Research

Friedrich's ataxia--or FA for short--is… More
Jul 13, 2006 News & Press Releases

Friedreich's Ataxia Research Alliance Announces Support from NIH RAID Pilot Program

Washington, D.C. — The Friedreich's… More
Jun 19, 2006 News & Press Releases

MDA and FARA to Accelerate Friedreich's Ataxia Research

Tucson, Arizona — The Muscular… More
Jun 08, 2006 News & Press Releases

EDS and RIT Partner to Develop Solution for Friedreich's Ataxia Research

When the Friedreich's Ataxia Research… More
Jun 07, 2006 News & Press Releases

Time for giving

In early May, the Van Schoik family… More
May 08, 2006 News & Press Releases

Promising Clinical Trials Fuel Preparations for "Friedreich's Ataxia Awareness Day" — May 20, 2006

Washington, D.C. — Friedreich's ataxia… More
May 03, 2006 News & Press Releases

Fundraisers party to help Friedreich's Ataxia group

The Van Schoick family is hosting a… More
Nov 08, 2005 News & Press Releases

Friedreich's Ataxia Research Alliance (FARA) Awards Edison Pharmaceuticals $3 Million Development Grant

Washington, D.C. — The Friedreich's… More
Oct 25, 2005 News & Press Releases

Friedreich's Ataxia Research Alliance (FARA) Joins with MDA and Seek A Miracle in Fighting Friedreich’s Ataxia

Washington, D.C. — The Friedreich's… More
Oct 20, 2005 News & Press Releases

LSU Researcher Receives NIH Grant to Study Causes of Friedreich's Ataxia

New Orleans — Louisiana State… More
May 13, 2005 News & Press Releases

"Exciting Scientific Advances" Trigger Hope on "Friedreich's Ataxia Awareness Day" — May 21, 2005

Washington, D.C. — Although there is no… More
Dec 15, 2004 News & Press Releases

Friedreich’s Ataxia Research Alliance Research Grants Reach $2-million Mark

Arlington, Virginia — The Friedeich’s… More
Oct 21, 2004 News & Press Releases

Researcher Targets DNA Replication for Better Understanding of Friedreich’s Ataxia

Chicago, Illinois — Maria Krasilnikova,… More
May 06, 2004 News & Press Releases

Explosion of Research Triggers Hope on "Friedreich’s Ataxia Awareness Day" — May 15

Washington, D.C. — Although there is no… More
Jan 24, 2004 News & Press Releases

All-volunteer IT Coalition Builds Computer Network Critically Needed for Friedreich’s Ataxia Medical Research

Washington, D.C. — It’s called FACE IT… More
Jan 19, 2004 News & Press Releases

Scientists Herald Beginning of the "Treatment Era" for Friedreich's Ataxia

Washington, D.C. — Researchers from… More

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