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FARAFARA Cure FA

Our Partners

FARA partners with government agencies, corporations, and advocacy groups that support scientific research aimed at finding treatments and a cure for Friedreich’s Ataxia.

We are very grateful for the support from all of our Partners.

2016 Partner of the Year

We are proud to recognize Ropes and Gray as FARA’s 2016 Partner of the Year. There are a number of unsung heroes in our FA Community, and we are grateful for the opportunity to celebrate the service of one of them. Ropes and Gray is a global law firm with over 1,200 attorneys on staff. The firm has provided probono legal counsel to FARA, specifically creating a template for grant contracts. Each research grant awarded by FARA is accompanied by a grant contract between FARA and the receiving research institution. This helps to ensure all parties have a common understanding of the grant terms (i.e. the timing of fund disbursement, the scope of work to be completed, and the forward path for any discovery). Attorneys at Ropes and Gray, especially Shrevanni “Vani” Suvarna, have been assisting FARA since 2008. Last year Vani and her colleagues donated over 80 hours of time to developing and helping negotiate contracts for our biomarker consortium. These great people have provided their legal expertise but have done so with a respect for FARA’s collaborative culture and an eye to the best interest of FA research advancement.

2016 Partner of the Year

2016 Friend & Ally - The Hulls and Alfanos

Non-profit Advocacy Partners

The National Institutes of Health (NIH) is the premier US federal government entity responsible for biomedical research and is the world's largest funder of such research. FARA works very closely with the NIH in many ways. FARA has provided grants to a number of scientists that have used that support to develop the preliminary data they needed to submit successful applications for much larger NIH grants. FARA leadership has served on the National Advisory Council of the NIH National Institute of Neurological Disorders and Stroke and continues to participate in the Council's public meetings. FARA leadership has, at NIH request, made a number of presentations at NIH public forums involving other advocacy organizations, other federal agencies, and representatives of the biopharmaceutical industry. FARA has been active in helping rally public support for the NIH -- twice testifying before congressional appropriations committees to encourage more robust budgets for the NIH and working closely with other organizations such as Research!America in building additional public support for the NIH. To learn more about FARA's relationship with the NIH and FARA's effort to rally support for the NIH, visit our Advocacy page.

The Food and Drug Administration (FDA) is the U.S. regulatory agency for food and medical therapies. FARA collaborates with the FDA to help educate FA scientists, pharmaceutical partners, and patient families regarding the regulatory process and to help educate the FDA regarding FA so as to maximize the prospects for successful development and approvals of FA treatments. FARA is also active in advocating for a more robust FDA budget, working closely with the Alliance for a Stronger FDA and Research!America.

Media Partners

FARA Friend & Ally award

The FARA Friend and Ally award is presented to volunteers within the FA community that lend their time, talent, and countless hours in support of FARA's mission to find treatments and a cure for FA.

2016 - Kurt and Amy Hull and Frank and Anna Alfano

We have encountered many good citizens and neighbors in our effort to treat and cure FA. Some volunteer for fundraising events, others donate and still others raise awareness. Then there are our friends, our allies who make whole parts of our organization and events happen. They invest their time and their resources, but they also invest themselves.

We are incredibly fortunate to have these friends, these allies as part of the FARA Energy Ball. Someone doesn’t stay up late to crunch auction data, or get up early to design posters, or load and drive a 26-foot moving truck, or sponsor the Ball and donate to the event’s Fund a Cure without a love for the whole- the mission, the work, and the people. Kurt and Amy Hull and Frank and Anna Alfano have done all of these things, and we are honored to present then with this year’s FARA Friend and Ally award.

The Hulls and Alfanos have been long time generous supporters of FARA through the Energy Ball and other Florida based events like rideATAXIA Orlando and Pull for a Cure. They have adopted FARA’s mission in a very personal way—one where they’ve invested countless hours in service to and invited friends and family to support. We are sincerely grateful to Kurt, Amy, Frank and Anna for not only being a significant part of the Energy Ball’s success, but also FARA’s mission to treat and cure FA. They have shown that they are Friends, Allies and an integral part of our FAmily

2015 - Sandy Callaghan

2014 - Tom & Dede Bradley

2013 - Herman & Tanya Fernandez - Lawrence Phillips

2012 - Broadreach Televsion - Rod Clingaman - Ava Forney

2011 - John Jackson - Crystal Wade

2010 - Mary Brown - Blair DeSaw - Julie Robertson

2009 - The Cast and Crew of the Cake Eaters

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Partner of the Year Selection Criteria

  • Leadership and/or employees/constituents within the partner organization are directly supporting FARA’s mission and demonstrate a commitment to curing FA faster than thought possible(e.g., fundraising, in-kind contributions, professional services, etc.).
  • Organizational culture that values community, helping others, volunteerism.
  • Commitment to increasing awareness of Friedreich’s ataxia or FARA.

FARA Friend & Ally award

The FARA Friend and Ally award is presented to volunteers within the FA community that lend their time, talent, and countless hours in support of FARA's mission to find treatments and a cure for FA.