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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.

2017 Partner of the Year

FARA is proud to bestow this year’s Partner of the Year Award to the Honorary Chairs of the Energy Ball for the past three years, Steve and Janell Griggs. Steve and Janell were first introduced to FARA through Steve’s predecessor at Tampa Bay Lightning, Tod Leiweke. Steve has often remarked that when he first agreed to chair the Energy Ball, it was to honor Tod’s commitment to the cause. Over a short time, as they got to know local people living with FA, Steve and Janell’s connection to the cause became more personal. Steve met his friends with FA on the bike trail for a Saturday ride. Janell met members of the Energy Ball committee for coffee. Both pledged to support as much as possible—and that they did with sponsorship of the Energy Ball, as hosts of the Patron Party, and through donation of Lightning trips, memorabilia to the auction, and an entire suite for the Santana concert for Fund a Cure giving. With generosity and leadership, Steve and Janell enhanced the level of the Energy Ball event and its capacity for fundraising and brought important supporters, new awareness and critical resources to research. We are grateful to call them partners in this fight to cure FA.

2017 Partner of the Year

Steve and Janell Griggs

2017 Friend & Ally

Charlotte Pizzo and Tim Block

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.

2017 - Charlotte Pizzo and Tim Block

The two honorees for the Friend and Ally Award are Charlotte Pizzo and Tim Block of the Outback Southeast Region. Charlotte has been a key teammate in the success of rideATAXIA Philly. For nine years, Charlotte coordinated the food from Outback Steakhouse, Bonefish Grill and Carrabba’s Italian Grill at the ride. If you’ve ever attended rideATAXIA Philly, you know the food is the main event. Even when staff and leadership changed in her Outback team, Charlotte was the constant who ensured we maintained the best post ride food. In addition to coordinating the huge food effort, Charlotte has executed many other tasks like making early morning coffee and hot cocoa the year it was rainy and cold; transporting grills to the event site; and securing donations from key sponsors like Hank’s Root Beer and Coastal Sunbelt Produce. Charlotte does this all with efficiency and a smile, without seeking recognition, just as a true friend.

Tim Block and the Outback Southeast Region maintain an incredible grassroots fundraising effort spanning the Outback Steakhouse restaurants throughout the Carolinas. For years, Tim has led the region in organizing events such as golf tournaments and 5K runs. Tim and his team have fundraised and hosted events independently, devoting a significant amount of time and effort to the cause. Each fall, Tim and his team send the proceeds from their fundraising, upwards of $50,000 annually, and they do all of this without ever needing to be asked. Tim is the kind of friend and ally who continues to give where he sees the need.

2016 - Kurt & Amy Hull and Frank & Anna Alfano

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.