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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.

FARA is excited to launch our FA Research Flash Talk series

Have you watched everything on YouTube and Netflix?
Need a break from COVID-19 news?
Join Us for the FA Research Flash Talk Mini-Series!

In honor of FA Awareness Month, FARA is excited to launch our FA Research Flash Talk series- featuring Young Investigators from FARA funded laboratories around the world. This five-part series will cover key aspects of FARA funded research from gene and protein function to clinical outcomes and insights. Each session will include Flash Talks from three to four Young Investigators (ie postdocs and graduate students). A Flash Talk is limited to a maximum of five minutes and a single PowerPoint slide, and will be suitable for a lay audience. We have also allotted time for a brief Q&A following the talks. If you'd like to attend a session please click the appropriate registration link below, or watch recorded Flashtalks that are complete.

May 7 - Flash Talk 1 Understanding FXN Gene and Protein Function
May 12 - Flash Talk 2 Understanding FRDA with Disease Models
May 15 - Flash Talk 3 Molecular Pathways In FRDA
May 21 - Flash Talk 4 Therapeutic Approaches
May 28 - Flash Talk 5 Clinical Outcomes & Insights

Please email if you have any questions.

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Monthly Update - April 2020

Our team remains hard at work from their home offices. Please read our April 2020 Monthly Update. We want you to know how FA research is continuing during this time.

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Why the FA Global Patient Registry is Important to Me

Join the Registry

The first project I took on, when I began working at FARA, was creating the FA Patient Registry. At the time, there was no database to store patient information, so we began from scratch assembling the perfect prototype to hold this information. We recruited a team of IT volunteers from Electronic Data Systems and students from the Rochester Institute of Technology, and they custom built the registry platform. We opened that registry to the FA community in 2005.

For me, the patient registry is a fantastic resource for several reasons. It has allowed us to better understand the prevalence of FA in geographic areas, ensured 100% recruitment and enrollment in clinical trials and clinical research studies, and is a primary resource in bringing us together as a global community.

Why did we switch to the new registry?

The original registry platform served us amazingly well for 14 years. In 2019, we thought it was best to update our registry model to better accommodate everyone in the FA community. From the global perspective, we needed a platform that was compliant with new privacy rules and ensured data security, that aligned with present day technology. We also wanted a system that was able to handle foreign language translation, as well as a platform with more research capabilities.

This new system will allow us to easily upload surveys from physicians in our network and quickly alert the patient community to these opportunites. I believe the new registry is a more robust research tool with more analytic capabilities. In the future, we will be able to conduct research directly through the registry.

As of today, we have > 715 patients registered, representing 40 countries. There are an estimated 15,000 FA patients worldwide. This registry is for people diagnosed with Friedreich's ataxia. Parents of minors diagnosed with FA can register an account on behalf of their children. It is important that we have your current contact information. So, if you have not already set up your account in the new registry, we invite you to join. Together, we will cure FA!

Register Here!

rideATAXIA Dallas 2020 - Thank you!

Hello y'all! We are together in spirit today for rideATAXIA Dallas. You united as one team from several states to raise over $170,000 for FA research. We thank you, and we celebrate you. Check out this video for some fun with Kyle and some special shout outs. #rideATAXIAQuaranteams

A Note to Our Community Regarding COVID-19

FARA would like to communicate with the FA community regarding the Coronavirus (COVID-19) for several reasons but needs, first, to make clear that, although we have vetted this message with leading FA clinicians, we of the FARA staff are not physicians; we are not in a position to provide medical advice, and we are not providing medical advice in this message.

Some individuals with FA are considered “People at Risk for Serious Illness from COVID-19” as defined by the CDC, specifically, individuals are at higher risk for serious illness from this virus if they have serious chronic medical conditions like heart disease, diabetes and lung disease.

In observance of this guidance, FARA has postponed the upcoming rideATAXIA Dallas event. We will continue to closely monitor developments locally and nationally, with respect to upcoming Spring events. We will communicate accordingly closer to those event dates.

Depending on your personal health and the situation in your local area, here are some points to keep in mind:

  • Check the CDC recommendations for People at Risk for Serious Illness from COVID-19. Take reasonable precautions that the CDC recommends: keep space between yourself and others, wash your hands, avoid touching your face, avoid crowds, restrict travel to the extent that you can, and stay off cruises. This may seem simple and common sense, but these are the most important steps you can take now.
  • For routine health maintenance for Friedreich’s ataxia or non-FA issues, such as annual well-visits or checkups, check with your physician, but in many cases this can be safely deferred for a few months.
  • For active health issues such as managing diabetes, cardiomyopathy or other conditions continue to be evaluated and monitored by your physicians.
  • For those participating in clinical trials, it is important to keep these appointments so that your safety is monitored and so that you don’t experience problems receiving study medications. We encourage you to be in contact with your study coordinators and physicians, if you have concerns about an upcoming visit.
  • If telemedicine resources are available to you, this may be a good option for questions about COVID-19.

General information about COVID-19, including links to what is happening in each state, can be found on the Centers for Disease Control website, which will be updated as new information becomes available.

Please note: This is a rapidly evolving situation. The comments provided are based on information available at the time of posting.

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