Saturday, April 02, 2005

Blue Bracelets - A Step Toward a Cure?

For Chaz Southard, hope exists in the form of a blue plastic bracelet.

"People naturally ask why you're wearing the bracelet and what it's for," said the 25-year-old Topsfield resident who suffered a spinal cord injury two and half years ago. "It's a talking piece more than anything else."

The message stamped into the blue flexible band reads "Fight With Courage - Cure SCI," and, according to Southard, that just about says it all.

"People living with spinal cord injuries are a silent minority," said Southard. "There are hundreds of thousands of us in this country, but there's no exact count anywhere. That's how invisible we are. We need to make our voices heard. We need people to understand how important a cure is and how close we are to finding it."

For the asking price of $5 each, the blue bracelets - spin-offs of Lance Armstrong's "Live Strong" cancer fundraising bands - are primarily designed to raise funds for spinal cord research and a hoped-for cure, preferably sooner rather than later.

"Top doctors in this country have told me that the more money that's poured into spinal cord research, the faster I'll get out of a wheelchair," said Southard. "I want this cure."

Injury leads to action
Since his injury in August 2002, Southard has devoted himself to a vigorous regimen of physical exercise and therapy in an attempt to restore movement and sensation to his body. His progress, according to Southard and his family, has been remarkable, but his recovery is far from complete. The most debilitating effects of his injury, said Southard, are a lack of independence and the presence of chronic pain. However, he continues to be encouraged by the return of intermittent sensation and motor ability.

"Only recently could I feel water again," said Southard. "I can't express what that feels like. I don't have the words to describe it. It has to be really cold water, but, still, I can feel it."

Southard's range of motion and physical mobility may be limited, but his passion and dedication to the cause of finding a cure for spinal cord injury propels him into new activities and outlets every day. In addition to publishing editorials and columns in various local newspapers, including the Tri-Town Transcript, Southard maintains his own Web site dedicated to lobbying for his cause - a Web site that, according to his records, gets upwards of 60 'hits,' or log-ons, per day. Southard has evolved into nothing less than a grassroots activist, as evidenced by his involvement with the Cure Paralysis Now organization.

Next weekend, Southard, his family and his best friend Tod Ohensian of Boxford are traveling to Washington, DC for, as Southard says, "the first wheelchair rally in history."

The Cure Paralysis Now Spring into Action Rally - of which Southard is one of the volunteer organizers - will convene Tuesday, April 12, at 10 a.m. outside the U.S. Capitol building. Dana Reeve, wife of the actor Christopher Reeve who recently died of complications a decade after suffering a spinal cord injury, will be one of the event's main speakers. The primary goal of the event is to lobby for passage of the Christopher Reeve Paralysis Act (CRPA) that has been languishing in Congress for the past five years.

Since the act is currently unfunded, the rally is also calling for the allocation of $300 million over three years to establish clinical trial networks that provide crucial data about risks and benefits of therapies, eliminating those that prove to be ineffective or risky. According to the Web site CureParalysisNow.org, establishing a spinal cord clinical trial network in this country is essential to finding a way to cure spinal cord injuries. Why the CRPA has been stalled for so long can only be speculated, but, according to Chaz Southard's father Chuck, it may be because people associate the controversial embryonic stem cell therapies with the Act.

"There are so many wonderful discoveries and therapies regarding a cure for spinal cord injuries that have nothing to do with embryonic stem cell research," said Chuck Southard in a recent interview. "Yet, it's as if these other therapies and discoveries are condemned by association. They can't make it through the fog. When this country pays $14 billion a year to care for members of the spinal cord injured community, asking for $300 million to find a cure just makes sense. If we can send people to the moon, we can find a cure for paralysis."

Participants in the Washington, DC rally are also hoping to gain a commitment from the National Institute of Health (NIH) to place a high priority on SCI research.

"It's all about trying to find a way to get treatments from the scientist's lab to the patient's bedside," said Southard, who, along with his family, is scheduled to meet personally with Sen. John Kerry as well as Sen. Kennedy's staff members to discuss the issues.

Bracelet offers a common bond
Southard's family is not the only one in Topsfield working for spinal cord injury awareness and a cure. Billy Qirici, owner and operator of the Daybreak Café in the Topsfield Village Shopping Centre sports a bright blue SCI bracelet on his wrist.

"I haven't taken it off since the moment I put it on three months ago," said Qirici, whose younger brother suffered a spinal cord injury 16 years ago while doing gymnastics on the beach. "When someone you love suffers an injury like this, it ties you to all others who suffer the same. It brings you all into the same category."

Qirici is planning on selling the blue bracelets from the counter of the Daybreak Café as soon as his order arrives from the Internet supplier.

Southard's mother Julie agrees with Qirici's sentiment that a special connection exists between those who understand a certain type of injury or illness.

"My bracelet - it's really a bond," said Julie Southard. "[When I see others wearing one] I feel like I'm joined in a quiet battle with other people who understand."

To order a "Cure SCI" blue bracelet and to learn more about the issues surrounding spinal cord injury, visit www.sciwalker.com or www.chazsouthard.org. For additional information on the rally in Washington, DC on April 12, visit www.CureParalysisNow.org.

By: Barbara R. Bodengraven