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WEST PALM BEACH, Fla. _ Almost everyone knows about breast cancer, diabetes, and heart disease. Fund-raisers to support organizations that research these diseases are usually well-attended.
But how many people know of, or support research to eradicate rare diseases? These conditions often are out of the public mainstream and do not provide jackpots for drug companies, so getting money for treatment and research can be difficult.
Have you heard of inclusion body myositis, osteogenesis imperfecta or Charcot-Marie-Tooth disorder?
Chances are, the answer is no.
Because Charcot-Marie-Tooth _ a neurological disorder that causes muscle weakness and sensory loss _ runs in his family, West Palm Beach lawyer Rod Steele has been working to raise money for research.
Specifically, he focused his efforts at a recent event he hosted on persuading those attending to help underwrite a research protocol looking at Vitamin C's effects on CMT.
"This is an excellent opportunity to support research which could have wide-ranging impact on neurological diseases worldwide," he wrote to perspective supporters.
(CMT is related to its better-known cousins, multiple sclerosis and amyotrophic lateral sclerosis, or Lou Gehrig's disease.)
Despite having a congressman on the host committee, and presenting nationally recognized speakers and researchers in neurology, the event was a tough sell.
Part of that was because this was the first time Steele had tried to raise money for CMT, and the event took place in Palm Beach, a notorious hot spot for fund-raising.
But a big reason, as with all rare diseases, is that so few people have CMT, even though one in every 2,500 Americans is affected by it, that not many of us are moved to write a check for it.
"It's proven difficult, frankly," Steele says of his efforts to get research money.
But Steele has taken a direct path. Instead of a glitzy ball, which he admits he wasn't capable of producing just yet, he is taking a serious approach because "it's very serious research we're looking at."
He is looking to help support a $5 million, three-year research effort being launched by the University of Rochester (N.Y.) and has promised to keep his supporters informed of the progress of the research.
The Charcot-Marie-Tooth Association _ (800-606-CMTA) _ is a member of the Connecticut-based National Organization for Rare Disorders _ both organizations were founded in 1983 _ and its members are well aware of the difficulties of getting money for so-called "orphan" drugs.
(NORD can be reached at (800) 999-6673, or www. rarediseases.org.)
Even though a Philadelphia 76ers center, Todd MacCulloch, has the disease and was missing games because of it, CMT really didn't penetrate the public consciousness.
But that's not unusual. How many of us respond to appeals for money, or even for our time, when we don't have any personal connection with a disease or disorder?
Maybe it's time to change that.
Carolyn Susman writes for the Palm Beach Post. E-mail: carolyn_susman@pbpost.com
Cox News Service
