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.



 

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

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
 

The international scope of ataxia research was well represented by over 430 conference attendees from twenty-one countries!  We are grateful for such meaningful participation from all aspects of the research community including 150 attendees from academia and regulatory, 140 attendees from industry, 100 junior investigators and representatives from seventeen patient advocacy groups.

We were energized by the dynamic exchange of ideas during the oral and poster presentations as well as during the flash talks and the mentoring session. We hope the attendees had the opportunity to foster collaborative relationships and left with a renewed sense of purpose.

If you attended the conference - please take a moment to share your feedback by Taking this Survey.

FARA Interview Series - Behind the Scenes
Videos from the conference:

1 - Coverage of IARC 2019
2 - Interview with Jen Farmer
3 - Interview with Dave Lynch and Jane Larkindale
4 - Interview with Rob Wilson and Grazia Cotticelli
5 - Interview with Dave Corey and Merek Napierala
6 - Interview with Layne Rodden and Sanjay Bidichandani
7 - Interview with Michael Clark and Mark Payne
8 - Interview with Louise Corben and Adam Vogel
9 - Interview with Kathy Mathews and Antoine Duquette
10 - Interview with Dave Lynch
11 - Interview with Oliver Griso
12 - Interview with Helene Puccio and Massimo Pandolfo
13 - Interview with Ian Blair and Clementina Mesaros
14 - Before There Was a FARA
15 - Maybe This Won't Take Forever
16 - Get Us Together, It's Never Been Done Before

Uncoordinated movements, impaired speech caused by muscle weakness, diabetes and cardiomyopathy: Friedreich’s ataxia hits hard and early. This neurodegenerative orphan disease, for which no treatment exists, generally manifests between the ages of 5 and 15, initially affecting walking.

Occurring in 1 in 30,000 people, the disease is rare. To identify the best ways of monitoring its progression, a research network has been created. CHUM neurologist Antoine Duquette and his colleagues at the Centre de réadaptation Lucie-Bruneau are collaborating in an international study directed by Dr. David R. Lynch of the Children’s Hospital of Philadelphia.

Read the entire article HERE