Research and clinical programs

Scientific Conference Program

FARA has organized and supported a number of scientific conferences to keep the field informed of research progress and build collaborations and synergistic connections between FA researchers. FARA’s International Scientific Conference on Friedreich’s Ataxia has grown over its three iterations demonstrating the remarkable research advances into the underlying mechanisms of FA and increased interest within the scientific research community.

ARC 2015 logo
2015 IARC a resounding success

About ARC-2015
The International Ataxia Research Conference 2015 took place in Windsor, England on the 25th-28th of March. FARA was able to partner with International Ataxia Research Organizations to co-host what was the largest ataxia research conference. It was hailed as a great success for the advancement of Ataxia research with new collaborations being formed and ground breaking research being presented. Delegates arrived from all over the world to discuss the latest research in the Ataxias, and around 340 people attended in total. We would like to thank everyone who attended the conference and we hope that it inspired you to keep up the great work!

View the abstract Book     or     View the Delegate List

The research presented at the IARC 2015 was conducted all over the world, as illustrated on this map:
Here are a few pictures from the conference:

- Poster and oral presentations
- Kyle Bryant's standing ovation after his inspirational talk

"I would like to say thank you to the all of the work the ARC Committee has put into making the conference run without a hitch! It was a truly rewarding experience for me as a graduate student to be welcomed into such a wonderful community of patients, clinicians and researchers all working together to cure the ataxias." - IARC 2015 Conference Attendee

The conference was closed by Clodagh Clerkin, who read her poem about what it's like to live with ataxia and the hope that the research conference has brought her, click here to read it.

Many thanks to the Scientific Steering Committee:
Paola Giunti, Barry Hunt, Michele Lufino, Giovanni Manfredi, Massimo Pandolfo, Hélène Puccio, Roberto Testi, Rob Wilson and representatives from Ataxia UK (Julie Greenfield), FARA (Jen Farmer) and GoFAR (Mina Ruggeri).

Many thanks to the Conference Planning Committee:
Ataxia UK, Ataxia Ireland, FARA and GoFAR.

Conference History

On the day following FARA’s incorporation, the new organization submitted a grant application to the National Institutes of Health (NIH) for the first International Scientific Conference on Friedreich’s Ataxia convened April 1999.

2011 - 4th FARA International Scientific Conference (3 days)
200 scientists/participants from 15 countries, 7 pharmaceutical companies and 9 advocacy groups The conference was held in Strasbourg, France.
Strasbourg FA Scientific Meeting Impressions
Conference Photos and Thanks to Partnes and Sponsors
2006 - 3rd FARA International Conference (3 days)
150 scientists from 12 countries,
6 pharmaceutical companies and 6 advocacy groups
2003 - 2nd FARA International Conference (5 days)
100 scientists from 12 countries,
4 pharmaceutical companies and 4 advocacy groups
1999 - 1st FARA International Conference 3 days)
80 scientists from around the world,
zero pharmaceutical companies and one advocacy group

Research Abstracts from meetings can be found in the right hand column.

In the interim time between its International Conferences on Friedreich’s Ataxia, FARA helped support the Ataxia Investigators Meeting held in 2006 and 2008.

Summit Meetings

FARA has also convened summit meetings to focus on significant areas of FA research such as cardiology and mitochondrial function. Such meetings facilitate in-depth discussions among experts and advance a specific research need.

Cardiac Summits

In 2007, a Cardiac Summit was convened of leading cardiologists and researchers gathered to discuss FA related cardiology issues. One of the primary outcomes of this meeting was the documentation of gaps in knowledge regarding cardiac disease in FA and the assignment of research teams to begin work in these areas. To further support these efforts, FARA and the American Heart Association formed a new partnership to co-fund grants. Proceedings of this meeting are posted on the right.

In a continued effort to bring more research and attention to cardiac involvement in FA, the 2nd FA Cardiac Summit was held on June 11, 2010. Twenty participants were invited, representing diverse areas of basic science, clinical research, and cardiology. One of the goals of the meeting was to identify clinical and basic science questions that are important to solve to better understand cardiac disease in FA, such as establishing hypotheses and explanations for how mitochondrial dysfunction in FA might lead to cardiac disease in FA. One outcome of the meeting was overwhelming consensus and support for achieving improvements in cardiac care for individuals with FA. This will be done through the development of standards of care and further development of the cardiac expertise at our Collaborative Clinical Research Network in FA sites and beyond.

Mitochondrial Summit

FARA also co-sponsored a Mitochondrial Summit with the Muscular Dystrophy Association, on May 20-21, 2008, to share and discuss approaches, insights, and mechanisms that suggest new therapeutics for mitochondrial neurodegenerative diseases.

Therapeutics Symposium

More than 100 FA researchers and our advocacy partners from around the world gathered July 15-17, 2009 for the FA Therapeutics Symposium in Philadelphia, PA. Presentations and discussions highlighted:

  • progress in the development of previously identified therapeutic candidates, such as HDACI and TAT-Frataxin results from clinical trials including the Phase I study of A0001 and Phase III of Idebenone
  • recent discoveries that point to new therapies
  • advancements in new cell models and drug discovery and development assays
  • clinical research including biomarker studies and new clinical outcome measures

Cellular Models

The availability of well-characterized cellular models is highly beneficial for drug discovery and testing, as well as for developing gene and stem cell therapies. To facilitate communication, cooperation, and collaboration among researchers various types of cellular models, especially iPS-based neuronal and cardiac models, the Cellular Models and Cell Therapy meeting was held in Chicago in March, 2010. One of the key outcomes of the meeting was consensus on the need for reproducible, stable, well-characterized FA iPS cell lines that are appropriate for research (including drug screening), maintained in a reputable facility, and distributed among researchers.