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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.


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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FARA job posting - rideATAXIA Event Coordinator

Click to view PDF
FARA is seeking a full time Event Coordinator for the rideATAXIA program.
Please click HERE to view the PDF.
 

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

Downingtown, PA (December 5, 2019) - Press Release - The Board of Directors at The Friedreich’s Ataxia Research Alliance (FARA) today announced the promotion of Jennifer Farmer, MS to the role of Chief Executive Officer.

Serving as the Executive Director for FARA since 2007, Ms. Farmer was instrumental in the growth and stewardship of FARA’s research programs from $1 million in funding to $6 million today, the expansion of the Friedreich’s Ataxia Clinical Research Network, and the establishment of the Center of Excellence at Children’s Hospital of Philadelphia along with the Hamilton and Finneran Families. More than fifteen therapeutic development programs for FA have started in the biopharmaceutical industry during Ms. Farmer’s time as Executive Director, and she has led the way in ensuring FARA is a model in patient centered research.

As CEO, Ms. Farmer will continue to work closely with FARA’s Scientific and Research Officers and Directors and Scientific Advisory Board to prioritize and direct research discovery that answers key questions in the understanding of Friedreich’s ataxia (FA) designed to drive new therapeutic development programs. Ms. Farmer will also continue to work closely with FARA’s biopharmaceutical industry partners that are currently developing therapies in support of FARA’s mission to ultimately treat and cure FA.

FARA Board Chairman, Paul Avery said, “Throughout her tenure, Jen has consistently displayed an exceptional commitment to our mission of curing Friedreich’s Ataxia. Her unwavering work ethic, collaborative spirit, thoughtful strategic mindset, and overall managerial talents, are a few of the many traits that highlight her effective leadership style.”

Prior to serving as Executive Director for FARA, Jennifer split her time between grant manager for FARA and genetic counselor and clinical research coordinator in Dr. David Lynch’s FA clinic at the Children’s Hospital of Philadelphia. In these earlier roles, she was directly involved in the establishment of the Collaborative Clinical Research Network in FA, the creation of the FA Patient Registry, and managed FARA’s growing grant program.

View Press Release PDF
 

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