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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.


The Ataxian Re-Release on YouTube!

Help Spread the Word!

The award-winning documentary about Kyle Bryant, Sean Baumstark, and Team FARA’s grueling Race Across America can now be viewed for free.

WATCH THE ENTIRE MOVIE HERE !

On Rare Disease Day (Feb 28), the FA community raised awareness of FA by encouraging people to watch The Ataxian- a documentary film about Team FARA’s participation in Race Across America to help find treatments for FA. The Ataxian is a documentary about the resilience of the FA community, and it is now available for free on Youtube.

In celebration, Kyle Bryant, Sean Baumstark and members of the cast and crew of The Ataxian hosted a Q&A on March 3, 2022 to answer YOUR questions about the film!

Watch the recorded Q&A Session!

HOW YOU CAN HELP

Make a post about your FA story and include the ask:

Please watch The Ataxian on YouTube. It’s a documentary about Team FARA, who biked 3005 miles across the country to help raise awareness about Friedreich’s ataxia and find treatments. The film is available now for free: https://youtu.be/Bi7rF37Gqic #TheAtaxian #RideAllnight".

Don't forget to use #TheAtaxian or #RideAllNight in your posts and be sure to tag @TheAtaxian on Facebook, Twitter, and Instagram!

Ask your friends and family to watch!
Other Sample posts:
  • Facebook/Instagram:
    (Insert photo of yourself + FA Infographic) I/my son/daughter/friend have/has Friedreich’s ataxia (insert your story here). I’m raising awareness of FA by spreading the word about The Ataxian, a free documentary on YouTube about the resilience of the FA community. Help me share this awesome film with new viewers. It features Team FARA’s participation in the world’s toughest bike race- Race Across America. This is one of my favorite movies and I really hope you check it out: https://youtu.be/Bi7rF37Gqic  #RideAllnight
  • TikTok video:
    Hey guys I have FA (insert story here). I want to raise awareness of FA by helping get more people to go on Youtube and watch the Ataxian, a movie about Team FARA who biked 3005 miles across the country to help find a treatment for FA. It's a really good movie and it's free so go check it out: https://youtu.be/Bi7rF37Gqic
  • LinkedIn:
    (Insert FA infographic) My lab researches the rare neuromuscular disease FA. I want to raise awareness of FA by helping get more people to go on Youtube and watch the Ataxian, a movie Team FARA who biked 3005 miles across the country to help find a treatment for FA. It's very inspiring to hear the story of someone my research is helping! Please check it out: https://youtu.be/Bi7rF37Gqic  #TheAtaxian  #RideAllnight  #RareDiseaseDay

FA Infographic

Below are some photos or videos from the film you can choose to include in your post.


The Ataxian Clip #1


The Ataxian Clip #2


The Ataxian Clip #3 John Lockwood
Team FARA and Fans
Sean Baumstark
Kyle Bryant rides in The Ataxian
Kyle Bryant and an inspired fan in The Ataxian

 
 

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

FARA is excited to announce the Center for Experimental Neurotherapeutics at St. Jude Children's Research Hospital in Memphis, TN as the latest site to join the Collaborative Clinical Research Network in Friedreich's Ataxia (CCRN in FA). The CCRN in FA is an international network of clinical research centers that work together to advance treatments and clinical care for individuals with Friedreich's ataxia. Each of the CCRN in FA sites is a place where FA patients can go to see a team of researchers, physicians, and health care providers dedicated to FA.

The CCRN in FA site at St Jude is led by a specialist in pediatric neurological disorders- Dr. Richard Finkel. Dr. Finkel is an international expert in spinal muscular atrophy and played a vital role in developing the first successful therapy for this disease, and he has been a leader in organizing key clinical trials for neuromuscular diseases. He has nearly 30 years of experience in translational research into the biology and treatment of neurogenetic disorders in addition to SMA, including Duchenne muscular dystrophy and Pompe disease.

The CCRN in FA is funded by FARA. The research centers involved in this network, including St. Jude, run a study called Clinical Outcome Measures in Friedreich’s Ataxia (FACOMS). This is a natural history study with the following objectives:
  • Collect data every year to understand progression of FA and quantify change in progression over time
  • Develop and validate outcome measures (timed walk tests, vision tests) to use in future clinical trials
  • Design and efficiently implement effective clinical trials
  • Collect biological samples such as cheek swabs and blood to identify and study biomarkers involved with the disease process and quantify the change in these markers over time
If you would like to participate in this study at St. Jude, please contact the study coordinator Colin Quillivan.


Monthly Update - February 2022

Dear friends,

Thank you for your support of FA research over the past year. Together, we reached some important milestones on the journey to treatments and cures for FA. Some of those achievements included:
  • Funding over $7.5M in research, including FARA directed projects like a working group on mechanisms of gene silencing, new animal model development, a potency assay to support drug development, and projects on frataxin function
  • Leading a community petition with over 70,000 signatures requesting FDA and Reata advance the New Drug Application for Omaveloxolone in FA
  • Completing enrollment of Phase 3 trial for PTC-743, MOVE-FA study, with over 140 FAers globally
  • Opening a new clinical research site for the Natural History Study in New Delhi, India

As you can see from the updates below, 2022 is also off to a busy and impactful start. Thank you for all you've done and continue to do to make this progess possible for all families living with FA.

Sincerely,
Jen

Jennifer Farmer,
FARA Chief Executive Officer


Our February Monthly Update also provides information on the following topics:

  • Pharma News
  • The CCRN in FA adds a new site - St. Jude Children's Research Hospital
  • FARA Funded Research
  • Upcoming In-Person Events
  • rideATAXIA
  • Rare Disease Day - February 28
  • Support FA Research Year-Round Through The Pathway, FARA’s Monthly Giving Program
  • Open & Enrolling Studies
More...

Read the Full February Monthly Update
 

February Monthly Update for Researchers


This month's Update for Researchers covers the following topics:

  • Meet the Community
  • Call for Abstracts for the 2022 FARA Flash Talk Series
  • Pharma News
  • Recent FA Publications
  • The FARA Forum Webinars
  • FARA Newly Awarded Research Grants
  • Meetings of Interest to the FA Community
  • Grant Opportunities
  • Job Advertisements
More...

Read the full February Monthly Update for Researchers
 
 

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


The latest episode in the Minutes of Science series is here!

Episode 9: FARA's Contribution to Advancing Science is narrated by FARA's Founder and President Ron Bartek. The episode explains the organization's foundational strategy as FARA's four pillars.

To catch the other episodes in the Minutes of Science series - View the full playlist
 
 

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