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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.


May Monthly Update for Researchers


FARA Flash Talks

FARA is proud to announce the 4 winners for best presentations of the FA Research Flash Talks series that took place in May:

  • Jaclyn Tamaroff, Children’s Hospital of Philadelphia
  • Joseph Rainaldi, University of California San Diego
  • Julia Dunn, Children’s Hospital of Philadelphia
  • Jamison Seabury, University of Rochester
These webinars featured Young Investigators from FARA funded laboratories around the world. Each session covered the different types of research that FARA funds; from basic research on understanding the disease, to examples of therapeutic approaches, biomarker and clinical research. The webinar sessions were attended by individuals with FA, caregivers, and researchers. We are grateful to all of the young scientists who participated, to the moderators for helping with the discussion and adding their own perspective on the studies presented, and to the audience for engaging with the presenters. To view the recordings of the four sessions, click here.

More...
Read the Full May Monthly Update for Researchers
 

FARA - FA Treatment Pipeline Webinar - June 2, 2021


FARA hosted a 90 minute webinar on the FA Treatment Pipeline on June 2, 2021, providing updates on therapeutic approaches in the pipeline with Jen Farmer, FARA's Chief Executive Officer; Dr. Barbara Tate, Chief Scientific Officer; and Susan Walther, Director of Patient Engagement. They reviewed the overall approach and strategy of the pipeline along with progress and new results for specific therapeutics approaches.

FARA Advocacy Newsletter - May 2021


The FA community learned this month that the FDA pivoted and asked Reata to request a Pre-NDA meeting for Omaveloxolone. This action was a direct result of your advocacy! Sharing your story was influential in educating and engaging those who received FARA’s petition. Your voice was heard! There is now another opportunity for action.

On May 25, 2021, US Representatives Jeff Fortenberry (NE-01) and Mike Quigley (IL-05), with Senators Chris Coons (D-DE) and Lisa Murkowski (RAK) re-introduced the bipartisan, bicameral Accelerating Access to Critical Therapies (ACT) for ALS (H.R. 3537/S. 1813). This legislation has 99 original co-sponsors in the House.

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Read the Full Advocacy Newsletter
 

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


FARA is proud to share the last video in our Flash Talk series. The Talks featured Young Investigators from FARA funded laboratories around the world. This four-part series covered key aspects of FARA funded research from gene silencing and disease mechanisms to therapeutic avenues and clinical insights. Each session included Flash Talks from four to five Young Investigators (ie, postdocs and graduate students). We also allotted time for a brief Q&A following the talks.

View the full playlist

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


FARA is proud to share our third Flash Talk - featuring Young Investigators from FARA funded laboratories around the world. This four-part series covers key aspects of FARA funded research from gene silencing and disease mechanisms to therapeutic avenues and clinical insights. Each session includes Flash Talks from four to five Young Investigators (ie, postdocs and graduate students). We also allot time for a brief Q&A following the talks.

Click HERE to register for future sessions. You will have the option to select which sessions you wish to attend.

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