BALTIMORE, April 19, 2011 /PRNewswire/ -- From a group of Long Island teens, celebs with a penchant for philanthropy and just plain folk with heart, people from around the U.S. are geared up to fight ALS and support the May 7 Fiesta 5K & Fun Run sponsored by The Robert Packard Center for ALS Research at Johns Hopkins. Location is Power Plant Live! in Baltimore's Inner Harbor area, 34 Market Place. Registration is at 6:30 a.m. with the race at 8:00 a.m. Post-race celebrations follow.
Honorary co-chairs are O.J. and Chanda Brigance. The Baltimore Ravens ex-linebacker announced his ALS diagnosis in 2008. Many former and current NFL greats have turned out for past Fiesta 5K's to support O.J., a treat for fans who may run alongside their gridiron heroes.
Packard Director Dr. Jeffrey Rothstein, says ALS also known -- "Lou Gehrig's Disease" -- is a neuromuscular disease characterized by a progressive degeneration of motor nerve cells. It occurs spontaneously and has no cure.
While The Robert Packard Center exists within the Johns Hopkins University School of Medicine, in Baltimore, MD, it draws more than 50 percent of its investigators from other institutions in areas including: Atlanta; Baton Rouge, LA; Bethesda, MD; Boston; Columbus, OH; Durham and Winston-Salem, NC; La Jolla, CA; Memphis, TN; Missoula, MT; New York City; Philadelphia; Belgium (Leuven); Germany (Ulm); Scotland (Edinburgh) and Canada (Quebec City).
The Packard Center depends on support from individuals, corporations, grants and groups including A Midwinter's Night Dream (AMND) which staged a New York fundraiser this past January to benefit ALS groups including The Packard Center. AMND was formed in 2004 by teens from Northport High School in New York's Long Island area to salute two teachers battling ALS. What started as a basketball fundraiser grew into a celebrity-filled gala and in 2007, AMND morphed into a bona fide non-profit steered by youth, many who have continued their commitment post-graduation, according to Jonathan Foster, one of AMND's founders, who now works for a Washington D.C. lobbying firm.
Past AMND soirees for ALS have drawn top athletes and celebs including Billy Baldwin, Caroline Rhea, Edie Falco, Adam Graves, David Cone, Curtis Martin, Nick Swisher, Richard Kind and Tommy John. AMND hit the $2 million mark with funds raised after this past January's event.
AMND has fielded a team for this year's Fiesta and is sending volunteers to help as well, according to Amalia Sirica, a senior at Duke University who is on the AMND board and helped stage a fundraiser in Durham, NC last fall for Duke's ALS Clinic, headed by Dr. Richard Bedlack, who also is a Packard Center scientific investigator. Bedlack created ALSUntangled, a group committed to either debunking or proving the efficacy of a range of ALS therapies.
Other groups sending teams to this year's Fiesta 5K include Team Low & Slow, headed by Gary and Nancy O'Connor, of Rochester, NY. Gary has ALS. A number of Packard Center scientific investigators are in New York including Dr. Steven Burden, at New York University and Dr. Giovanni Manfredi, of Weill Medical College, Cornell.
Teams in the Baltimore area recruiting members en mass include Team Radcliffe and the Connelly Crusaders.
A Baltimore County attorney for more than 25 years until ALS took its toll, Mike Radcliffe was playing lacrosse in Ocean City in 2008 when he noticed spasms in his wrist. He thought it was a pinched nerve.
"I went to my doctor and he said he thought it was ALS," says Radcliffe. "It was the only (disease) I knew of with no treatment or hope."
In one way, Radcliffe was lucky. His diagnosis was quick and he began getting care early on at the Johns Hopkins clinic. Studies show comprehensive care may extend quality of life.
Tim Connelly, of Timonium, MD, formed the "Connelly Crusaders" after his mother and brother got diagnosed with ALS in 2009 within weeks of each other.
"I know ALS isn't as prevalent as cancer," says Connelly, "But once we had to face ALS, it seemed a lot of people we knew either had the disease or knew someone with it, and those connections have become a stepping stone."
To enter the Fiesta 5K register now at www.fiesta5k.org. Cost: $30 pre-race; $35 race day; kids 8 and under are free and members of The Baltimore Ravens "Rookie Club" over eight get a $10 on-line only discount. Those who can't attend may register as "siesta runners." More than 1,600 turned out last year, raising $237,794. Top fundraisers and runners receive awards.
SOURCE The Robert Packard Center for ALS Research at Johns Hopkins