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Scientific Conferences

International Ataxia Research Conference

2015 IARC ImageFARA 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.

Thank you to all of our conference sponsors!


Scientific Conference Program

ARC 2015 was a 4-day international research conference for academics and industry scientists interested in basic and translational research in the ataxias. It was hosted by Ataxia UK, Ataxia Ireland, US-based FARA (Friedreich’s Ataxia Research Alliance) and Italy's GoFAR. The conference included the following sessions, to cover a wide range of progressive ataxias, including Friedreich’s ataxia and the spinocerebellar ataxias:

  • Session 1: New genes and developments in diagnosis of the ataxias
  • Session 2: Genetic and molecular mechanisms of the ataxias
  • Session 3: Cellular and animal models of the ataxias
  • Session 4: Cellular and systemic pathways
  • Session 5: Drug discovery and emerging therapeutic strategies
  • Session 6: Biomarkers and functional measures
  • Session 7: Clinical trials and trial design

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).

Conference Planning Committee:

Ataxia UK, Ataxia Ireland, FARA and GoFAR.

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.


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.

2015 - International Ataxia Research Conference
300+ scientists/ participants, 15 pharmarceutical companies and 7 advocacy groups.  The confereence was held in Windsor, England.

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.
Conference Photos and Thanks to Partners 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, 2008, 2010, 2012, and 2014.

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.


In 2014, FARA partnered with the National Center for Advancing Translational Sciences (NCATS, part of the National Institutes of Health) to organize a meeting to determine what studies should be done to develop high quality biomarkers for FA. Approximately 50 people attended the meeting, including experts in FA, experts in biomarker development and companies with an interest in developing therapies for FA. The meeting was set up to encourage discussion, and there was lively debate between the participants. Many possibilities were suggested — some which had never been considered in FA previously, others where significant data exist ed. Discussion ranged from biochemistry to electrophysiology to imaging studies to gait analysis, while always remaining focused on what could be measured in important tissues to FA, and what those measurements would mean. Experts from outside of the FA world suggested technologies not previously studied in FA, while FA experts compared and contrasted with known FA data to determine which would have the highest probability of success.

The meeting has provided FARA with a priority list of potential biomarkers that might be relevant to FA. We now need to start both pilot studies to see if biomarkers not previously considered in FA might be feasible, and longer-term studies to see how markers with some evidence might change over time in patients.  FARA will partner with companies working in these areas to fund and run these studies, and the resulting data will be available to everyone in the community. Development and validation of biomarkers should both accelerate progress in developing new therapies, and make the field even more attractive to drug developers.

Mouse Models

In 2012 and 2013, meetings organized by FARA brought FA scientists from around the world who are working on mouse models, induced pluripotent stem cell (iPS) models of FA, and gene therapy approaches. Researchers presented their latest data (not yet published or publically available) to help address gaps in the current models and share new discoveries and technologies. Cat Lutz from JAX labs reported on a significant breakthrough in a collaborative project, funded by FARA, to produce extensive characterization of several different FA mouse models. Several other investigators reported on ongoing efforts to continue to improve upon models. For example, the current mouse models are still relatively mild compared to humans (symptoms are mild and slow to appear) – if newer models had lower levels of frataxin or more cardiac symptoms, and showed symptoms earlier in life, our ability to screen drug candidates would be enhanced.   As a result of these meetings, a Mouse Model Task Force was formed that meets regularly to advance this initiative.

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.

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

Mitochondrial Summit

FARA 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.

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 can be found here

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.


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Conference History

  • 2015 - International Ataxia Research Conference

    300+ Scientists/ Participants
    15 Pharmaceutical Companies
    7 Advocacy Groups

    2015 Research Abstracts

  • 2011 - 4th FARA International Scientific Conference

    200 Scientists
    7 Pharmaceutical Companies
    9 Advocacy Groups

    2011 Research Abstracts

  • 2006 - 3rd FARA International Conference

    150 Scientists
    6 Pharmaceutical Companies
    6 Advocacy Groups

    2006 Research Abstracts

  • 2003 - 2nd FARA International Conference

    100 Scientists
    4 Pharmaceutical Companies
    4 Advocacy Groups

    2003 Research Abstracts

  • 1999 - 1st FARA International Conference

    80 Scientists
    0 Pharmaceutical Companies
    1 Advocacy group

    1999 Research Abstracts