THE DERBY CITY NSCIA NEWSLETTER

Message From the President

Dear Members & Friends-

In lieu of this month’s meeting we will have our annual Christmas party at Highland Court Apartments; 1720 Richmond Drive at 6:30 on December 19. I hope everyone will come join us for what is sure to be a fun time.

If you need directions, call Buddy at 458-0233 or David at 589-6620.

January’s meeting will be held at 6:30 at Frazier Rehab, 4th floor dining hall. Refreshments will be provided..

- David Allgood

From the Courier-Journal 11/2/05

HUNDREDS JOIN STEM CELL STUDY
By Kwang Tae-kim

Seoul, South Korea—For the past few decades, Kim Young-ja lived with the thought she would never walk again.

Seeing what she sees as a chance for a cure, the 55-year-old South Korean joined hundreds of patients who applied yesterday to take part in research with a worldwide stem cell center that hopes to cure hard-to-treat diseases with its trailblazing cloning technology.

“I spent the past 22 years in tears and I had no hope,” said Kim, who was paralyzed from the chest down in a 1983 traffic accident.
She is among thousands of people volunteering skin cells to help launch a global center that will grow embryonic stem cells for research. The World Stem Cell Hub, led by cloning pioneer Hwang Woo-suk, aims to one day help those suffering from ailments such as Parkinson’s disease or damaged spinal cords and who are willing to offer skin tissue for research.
But the scientists caution that actual treatment for such ailments is years away. Despite the high hopes of those volunteering for research, scientists don’t even know for sure if such future treatments will work.

The Seoul-based research hub opened October 19 with the aim of serving as the main center for providing scientists around the world with embryonic stem cells. They are master cells that can grow into all kinds of tissues in the body and are seen as a potential source of replacement for people with a variety of ailments.

(Continued On Page Two)

THE DERBY CITY NSCIA NEWSLETTER

Derby City 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
Dr. Bill Kraft – (502) 582-5865

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

STEM CELL RESEARCH, CONT’D

Yesterday, the first day it accepted applications from patients to participate in research, the Center received 3,500 responses, said Lim Jong-pil, an official at the Center at Seoul National University Hospital.

The center, which will have its first branches in Britain and the United States, is expected to provide other scientists room to get around government restrictions into research on embryonic stem cells.

Hwang has garnered world-wide attention for cloning the world’s first human embryos and extracting stem cells from them. In May, he announced that he had created the world’s first embryonic stem cells that genetically match injured or sick patients—a major step in the quest to grow patients’ own replacement tissue to treat diseases.

Instead of using embryos left over from in-vitro fertilization, the Koreans can create them from cloned skin cells. That process is favored by some scientists because cloning can create a perfect tissue match for patients.

Critics say such research condones creating human life for laboratory use. Removing stem cells often involves destroying days-old embryos, and the Bush administration has banned federal funding for research on all but a handful of old embryonic stem cell lines.
Officials at the center cautioned that their research is not the start of experimental treatment. Also, not everyone will be accepted; candidates will be screened. And it may take years to develop a treatment.

Kim, the woman paralyzed by an accident, lamented not being able to care for herself and her two sons. Her husband was also severely injured in the car crash.

“I could not do anything by myself. The feeling of desperation I had was beyond description,” she said.

Lee A-ja, who registered yesterday, can walk only a short way with a cane before her pain becomes too intense. The 64-year-old has used a wheelchair since a virus damaged her nervous system more than a decade ago.

“My only wish is to walk with my legs even for some months before I die,” she said as her husband filled out an application.

From the editor: A related article found on the Internet reports that the web site for the Hub in South Korea was so overwhelmed with attempts to submit applications on “Opening Day” that the system was virtually at a crawl, or standstill, for three hours.

THE DERBY CITY NSCIA NEWSLETTER

Refrigerator Calendar
*2005

DECEMBER         

5th   -  Elderly & Disabled Advisory Council Meeting
Mon    1:00-2:30 p.m.; TARC; 1000 W. Broadway; Board Room. 
            As this is a holiday, call for alternate date. 

19th -  Annual Christmas Party; Highland Court Apartments; 6:30 p.m. 
Mon   1720 Richmond Drive; For directions call Buddy or David. 

17th -  Metro disAbility Coalition Meeting; 1 p.m. – 3 p.m.; PVA Office on Goss Avenue.
Sat      Speaker to be announced; if questions, contact Terri Leasor at 589-6620 or at 
            mdclouky.org

JANUARY 2006

2nd  - Elderly & Disabled Advisory Council Meeting
Mon   1:00-2:30 p.m.; TARC; 1000 W. Broadway; Board Room. 

16th - Derby City Chapter Meeting, 4th floor activity room; 6:30 p.m.
Mon    Frazier Rehabilitation; Abraham Flexnor Way      

21st -  Metro disAbility Coalition Meeting; 1 p.m. – 3 p.m.; PVA Office on Goss Avenue.
Sat      Speaker to be announced; if questions contact Terri Leasor at 589-6620 or 
           mdclouky.org

For More Information Call
David Allgood, 502-589-6620

THE DERBY CITY NSCIA NEWSLETTER

The articles on this page are also from the Internet—ed.

NEW THERAPY FOR SPINAL CORD INJURIES

Massachussettes-based company Total Re-Cord, Inc., an early-stage company founded for the specific purpose of developing and commercializing new therapies for neurodegenerative diseases, plans to begin clinical trials in early 2006 with a new treatment for patients with spinal cord injuries.

RMx™, Total ReCord’s lead product, is a new non-cellular, non-drug based class of biotherapeutics that draws on the body’s natural regenerative process to stimulate the growth of new central nervous system tissue. “RMx is a promising alternative to embryonic stem cells that may have significant potential in the treatment of spinal cord injuries,” says Dr. John McDonald, the Executive VP and Director of the International Center for Spinal Cord Injury at the Kennedy Krieger Institute.

RMx’s regenerative matrix is a new method of treatment for spinal cord injuries that has shown promising results in preclinical trials in animal models. Total ReCord has created RMx based on the principle of supressing certain wound healing processes that interfere with central nervous system (CNS) tissue regeneration, while enhancing the desirable traits of these processes.

RMx first works to clean out the site of damaged tissue and allow for new cell growth. It then slows the development of scar tissue that can inhibit the regeneration of surviving axons while simultaneously promoting new blood vessel formation. Both of these processes are crucial for formation of new, healthy CNS tissue. Furthermore, RMx has certain stimulatory effects on the formation and elongation of new neurites. After this new tissue is grown, it can be trained to function in the body to restore movement, even weight-bearing steps in patients with spinal cord injuries.

In pre-clinical studies, animals that had experienced traumatic damage to their spinal cords and were initially completely paralyzed were soon able to move about after treatment with RMx. In most cases, they were able to make weight-bearing steps. Total ReCord is confident that human implants that have been successfully used in their animal studies will be effective in treating patients with spinal cord injuries. However, the extent of recovery that can be achieved with RMx in human patients will only become evident after the human clinical studies. RMx has also been found to have no toxic side-effects in animals.

Founder and CEO Jan-Eric Ahlfors is hopeful that following the first phases of human clinical trials, RMx will be placed on fast-track status for FDA approval and may soon be applied even to conditions that have kept patients permanently in wheelchairs for decades. Total ReCord’s innovations can potentially provide restored movement to victims of paralysis, stroke, and Multiple Sclerosis.

TREATMENTS FOR SCI VARY DEPENDING ON CAUSE OF INJURY

How patients are injured has a significant affect on how they are treated after a spinal cord injury. Those with auto coverage, particularly in states like Michigan with no-fault laws, typically receive more generous therapy and equipment benefits. People who are victims of violence or who are injured in sports accidents or falls often have no coverage for intensive therapy and don’t receive the modern equipment and other benefits patients with auto insurance get.

“The difference between auto accident survivors and victims of violence couldn’t be larger,” says Cathy Lysack, a Wayne State University associate professor of gerontology who is studying the disparities.

Here are two examples:
Mario Chavez, Lincoln Park: Chavez, 29, has had to call and plead to get therapy, a wheelchair, and even replacement wheels for his chair. He was shot at 7:00 a.m. July 7, 2003, in downtown Detroit as he unloaded his truck. Carjackers stole his truck and crashed it a few blocks away.

Unable to work after his injury, Chavez lost his job as a heating and cooling mechanic and along with it, his Blue Cross & Blue Shield health insurance. His Medicaid insurance does not cover the intensive therapy or the surgery abroad that he’d like to have. Even the changes made to the home where he lives—such as adding a ramp—had to come out of his pocket, he says.

Last year, he received the first scholarship awarded by the Rehabilitation Institute of Michigan’s Center for Spinal Cord Recovery. Since he started therapy at the institute in Detroit last November, the former body builder says he has gained strength and more function 6 inches below the injury that paralyzed him from the waist down.

Cortny Hoffman, Temperance: Hoffman was injured in a 2002 auto accident. She has received more than a year of intensive therapy at Rehabilitation Institute. Her insurance has paid for it fully, at least up to now. The coverage allowed her to order a modern wheelchair and will help underwrite the cost of a home she is building with her mother outside Monroe.

THE DERBY CITY NSCIA NEWSLETTER

From the Internet—editor

JET-POWERED WHEELCHAIR SURPISE

Guiseppe Cannella had a surprise for his mother-in-law when he put a jet-engine on the back of her wheelchair.

Mr. Cannella says the chair can now do top speeds of more than 60 mph and has proved the star of a model plane championship during the Bank Holiday.

A model plane enthusiast himself, Mr. Cannella has been putting on shows at Barkston Heath near Grantham, Lincs.

“It is just the wheelchair with the engine bolted on the back and steering in the front,” he said.
“Originally, it was a gimmick. I had a jet engine and I was going to put it on a go-cart.
“But the missus says put it on something unusual so I put it on the mother-in-law’s wheelchair,” said Mr. Cannella, who is from Luton in Bedfordshire.

“She was on holiday at the time so she didn’t know what I was doing until she came back. She actually thought I was doing it for her.”
Mr. Cannella’s mother-in-law, who had bought a new wheelchair, has Parkinson’s disease.
Her son-in-law has been collecting money for the Parkinson’s Disease Society and hopes to collect 1,500 pounds (British money) during the shows at the British Model Flying Association national championship.

“I have done it for fun, I just like going up and down in it,” said Mr. Canella.

Editorial Comment: This event happened in England and was published in this newsletter to provide a chuckle. It is not intended to inspire jet-engine assisted wheelchair travel on the Watterson Expressway.

FOR SALE !!!!

*2003 Ford F-250 lift-equipped green/gray van; leather seats, TV, DVD player. Playstation hookup, am-fm radio. Rick Miller, 937-2245.

*Shower Chair; 2 yrs old, negotiable; 2 RoHo cushions; low profile; $150 each; Invacare 900 Action Power Chair; 4 yrs. Old; $600. Call 448-5296.

*RoHo High Profile 16x16 cushions; $160; 589-6620.

*Cookbooks for Sale : Recipes compiled by Chapter members; $10:00. Call David @ 589-6620.

*Video tapes for sale . Various topics related to spinal cord injuries. Call David Allgood or Buddy Lawson.

***If assistance is needed to pay for any of the above items, contact Kentucky Assistive Technology Loan Corporation at for information on loans at 5% interest to qualified candidates.

THE DERBY CITY NSCIA NEWSLETTER

You are cordially invited to join us!

The Derby City Chapter of the National Spinal Cord Injury Association
consists of people with spinal cord injuries and similar physical conditions, their family members, friends, and
professionals or other interested parties.

We meet:

WHEN- Third Monday of every month from 6:30 to 9:00 PM
WHERE- Frazier Rehab Center , 4th floor Dining Room
220 Abraham Flexner Way

If you wish to be a member, donor, and/or be on the mailing list of the Derby City Chapter of the National Spinal Cord Injury Association please complete and mail the following form to the address below