The Friedreich’s Ataxia Research Alliance (FARA) and the UPenn Center for Orphan Disease Research are sponsoring fundraising events May 20 to mark Friedreich’s Ataxia Awareness Day — an annual celebration to call attention to the rare, debilitating and often life-shortening degenerative neuromuscular disorder.
Since its formation in 1998, FARA, a national, public, 501(c)(3), non-profit organization has been dedicated to supporting scientific research focused on finding better treatments to improve the quality and length of life and ultimately a cure for those diagnosed with Friedreich’s ataxia (FA).
The New Jersey Seaside Stride for children diagnosed with FA will kick off at St. Catharine’s Church in Seaside Park, N.J., with coffee and a gift basket auction. Later, participants will enjoy a leisurely three-mile walk in Seaside Park and along the Seaside Heights boardwalk. Comfortable shoes are recommended, but there’s no obligation to complete the entire three miles. Walkers will reconvene at St. Catharine’s for catered lunch by Carrabba’s Italian Grill of Bricktown, N.J., as well as a gift auction drawing.
In Philadelphia, the Fourth Annual Million Dollar Bike Ride — sponsored by the Penn Medicine Orphan Disease Center, starts from Highline Park, at 7:30 a.m., with 12-mile, 33-mile and 73-mile options. Participants will receive a complimentary shirt and all fundraisers a complimentary jersey.
According event organizers, the three previous million-dollar bike rides raised a cumulative $3.5 million, with 100 percent of funds going directly to FA disease research. The Orphan Disease Center has announced 31 grants — ranging from $40,000 to $101,000 each — to 21 institutions worldwide, raised by 23 disease-specific cycling teams during the 2016 Million Dollar Bike Ride alone.
FARA will host its rideATAXIA Philly event at Montgomery County Community College in Philadelphia on Sunday, October 15, 2017.
Because no effective treatment or cure yet exists for FA, the nonprofit organization sees its fundraising effort as urgent. FARA also funds the Collaborative Clinical Research Network, an international network of FA clinical research centers that work with pharmaceutical firms, government agencies, other research centers and FA patients globally to advance clinical trials needed to identify new therapies.
Managed as an all-volunteer organization until late 2005, FARA — established in 1998 — says its grassroots fundraising events have raised about $1 million, with more than 60 events held in 2014.
FARA Grassroots 2017 fundraising events scheduled for the rest of May include Pennsylvania Rare Disease Day on May 24 at the Pennsylvania State House in Harrisburg; “Cruizin’ For A Cause” for FARA! on May 25 at Denny’s in Johnston, Rhode Island; the 27th Annual Doubles Charity Tennis Tournament planned for May 26-29 at East Lake Woodlands Country Club in Oldsmar, Florida; and the 17th Annual Stoneleigh Stampede 5K/1-mile Walk on May 27 at Baltimore’s Stoneleigh Pool.
For a full schedule of FARA grassroots fundraising events through the rest of 2017 and up to March 3, 2018, click here.
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