DerbyCity Area Chapter of the National Spinal Cord Injury Association
ABOUT THE ORGANIZATION
The Derby City Area Chapter of the N.S.C.I.A. is a membership organization for individuals with spinal cord injuries, their families, and health professionals. Founded in 1984 as a Charter Member of the N.S.C.I.A., it was incorporated under IRS Section 501 (c) 3 as a not for profit organization. The Board of Directors consists of the Officers, Past President and the Board Members At Large.
*** OFFICERS
PRESIDENT
David Allgood - (502) 589-6620
VICE PRESIDENT
Adam Ford - (502) 425-2206
TREASURER
Tom Stokes- (502) 957-5865
LIAISON TO FRAZIER INSTITUTE
Jill Farmer
FUNDRAISING CHAIR
Betty Perry—(502) 647-0368
CORRESPONDING SECRETARY/WEB MASTER
Michael Feger- (502) 647-0368
PAST PRESIDENT
Adam Ford- (502) 425-2206
BOARD MEMBERS AT LARGE-
Mike Perry
Kelly Young
NSCIA DERBY CITY CHAPTER NEWSLETTER
Editor- Barbara Davis
Contributor- David Allgood
Visit Our Website at www.DerbyCitySpinalCord.org
The Derby City Area Chapter Newsletter is brought to you through the generous support of Frazier Rehab Institute
Stem Cell Gamble, Cont’d
Renowned Rutgers University SCI researcher Dr. Wise Young had initiated the CareCure Community website in July 2001 (www.sci.rutgers.edu). In an early poll, 75 percent of 84 members thought a cure for paralysis would be discovered in less than 10 years. One member complained that experts had been predicting a cure within 5 to 10 years since he was injured in 1990. A paralyzed Vietnam vet wrote from his (1960s) perspective: “The answer then was no way in hell can we fix your spine.” Others debated the meaning of “cure” or emphasized the importance of hope.
The Parsons learned about a surgical procedure in China performed by Dr. Hongyun Huang, a former postdoctorate fellow under Young at Rutgers. During one of his overseas flights, Roger arranged to visit Huang in Beijing, where he met a few Americans who were there for surgery. Roger concluded in an email to James: “Everything I saw and heard there made me extremely optimistic about the procedure.”
One of the Americans Roger met at Xi Shan Hospital in Beijing was Aaron Dempsey, 35, a C5 Quad who had been injured 15 years earlier. Aaron and his wife, Kendra, from Porter, Texas, had found numerous people treated by Huang on the CareCure website, among them, Bob Smith, another C-5,6 quad. “He was one of the main reasons that convinced us to go over there,” says Kendra. “He is able to sweat now and has gotten quite a bit back.”
Those treated by Huang, on average, regain about 2 levels of Motor and 4 levels of sensory return (each vertebra represents 1 level). This amount of restoration can be more critical for a quad than for a para, since even modest gains might improve breathing capacity, arm or hand dexterity. “I’m not a real optimistic person,” says Aaron. “But once I finally talked to Bob Smith, I started to get excited.”
Huang has done as many as 1,000 OEG (see “What Does it Mean?” below For Sales) procedures, including some on people with ALS, but evidence is mostly anecdotal and there is no structured follow-up. Published data is found mostly in Chinese journals. Both complete and incomplete SCIs are accepted for the procedure, time span of injury varies widely, and supplemental treatments both before and following surgery are not consistent. However, Wise Young says Huang’s SCI procedure is considered relatively safe, although limited. Those with ALS, who received OEG injections in their brains, also report moderate benefits, but these are temporary, and the procedure is riskier. When degeneration returns, the incurable disease runs its course.
The Dempseys corresponded with both Huang and Dr. Carlos Lima of Portugal, whose techniques are related. Lima takes olfactory ensheathing Glial Cells from the person being treated and implants them in the spinal cord, while Huang
