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.

Ataxia Research Conference 2015
FARA is excited to announce that the next International Friedreich's Ataxia Scientific Conference will be hosted jointly with Ataxia UK, and Ataxia Ireland as an international research conference on ataxia March 25-28, 2015 in the UK. The conference will include sessions on a wide range of progressive ataxias including Friedreich's ataxia and the spinocerebellar ataxias.
Call for abstracts and registration will open July 2014
Venue: Beaumont Estate, Windsor, UK
Conference 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) and FARA (Jen Farmer).
Sponsorship and program information coming soon
For more information email info@curefa.org
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
and
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.

 

International
Ataxia Research Conference

March 25-28, 2015

Beaumont Estate, Windsor, UK

Friedreich’s Ataxia Clinical Research Conference
Jun 6-7, 2013

Silver Spring, MD

27th Annual Meeting of Society for Neurochemistry, India (SNCI)
Feb 21-23, 2013

All India Institute of Medical Sciences
Ansari Nagar, New Delhi-110029, India

7th International Conference on Iron-Sulfur Cluster Biogenesis and Regulation
May 20-24, 2013

University of South Carolina in Columbia, South Carolina, USA.

International Conference on Friedreich’s Ataxia Research Abstracts
2011 4th International FA Conference Abstracts PDF
2006 FARA-NIH Conference Research Abstracts PDF
2003 FARA-NIH Conference Research Abstracts PDF
1999 FARA-NIH Conference Research Abstracts PDF

 

Cardiac Summit Outcomes
2007 Outcomes PDF