THE DERBY CITY NSCIA NEWSLETTER

Message From the President

Dear Members & Friends-

As of this writing, I have not yet scheduled a speaker for our August 17th meeting, but I am working on getting one scheduled. As usual, if we do not have a speaker, a video will be shown. Refreshments will be provided.

Our annual picnic, which will be in lieu of September’s meeting, will be held on September 17th at 12:00. See September’s issue for more details and directions to the picnic site.

October’s meeting will be held at Frazier Institute, 220 Abraham Flexnor Way, Louisville, in the 10th floor dining room at 6:30 p.m.

- David Allgood

From the Internet.– ed.

STUDY ESTABLISHES SAFETY OF SPINAL CORD STEM CELL TRANSPLANTATION

Transplanting human embryonic stem cells does not cause harm and can be used as a therapeutic strategy for the treatment of acute spinal cord injury, according to a recent study by UC Irvine researchers.

UCI neurobiologist Hans Keirstead and colleagues at the Reeve-Irvine Research Center found that rats with either mild or severe spinal cord injuries that were transplanted with a treatment derived from human embryonic stem cells suffered no visible injuries or ill effects as a result of the treatment itself. Furthermore, the study confirmed previous findings by Kierstead’s lab—since replicated by four other laboratories around the world—that replacing a cell type lost after injury improves the outcome after spinal cord injury in rodents. The findings are published in the current issue of Regenerative Medicine, published by Future Medicine.

“Establishing the safety of implanted embryonic stem cells is crucial before we can move forward with testing these treatments in clinical trials,” said Keirstead, an associate professor of anatomy and neurobiology and co-director of UCI’s Stem Cell Research Center. “We must always remember that a human clinical trial is an experiment and, going into it, we need to assure ourselves as best we can that the treatment will not cause harm. This study is an

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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
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.

STUDY ESTABLISHES SAFETY, CONT’D

important step in that direction.”
In 2005, Kierstead’s lab was the first to coax human embryonic stem cells to become highly pure specialized cells known as oligodendrocytes. These cells are the building blocks of myelin, which acts as insulation for nerve fibers and is critical for maintenance of electrical conduction in the central nervous system. When myelin is stripped away through disease or injury, paralysis can occur.
In this study, as in the original one, when the rats suffering from severe spinal cord injury were injected with the oligodendrocytes seven days after injury, the cells migrated to the appropriate sites within the spinal cord and wrapped around the damaged neurons, forming new myelin tissue.

By contrast, the rats who were only mildly impaired showed no increase or decrease in myelin generation, and no change in their walking ability after transplantation. According to Keirstad, the injury was so minor that no loss of myelin occurred. Therefore, a treatment based on remyelination would have no effect and the animals recovered motor function on their own. More importantly, while the treatment did not help with the functional recovery, it did not impair it. Upon further examination, the scientist found no damage to tissues surrounding the spinal cord indicating that the transplantation had not caused any damage to the animals.

“Our biggest safety concern was that in the case of severe injury, any harm the stem cell-derived treatment could cause would be masked by the injury itself,” Keirstead said. “In this study, we can see in animals that are only slightly injured that the transplantation does not cause visible harm and the injury is not hiding any damage the cells may have caused to the spinal cord or surrounding tissue.”

Keirstead is working with Geron Corp. to bring this treatment for acute spinal cord injury into Phase I clinical trials within the next year.

Frank Cloutier, Monica Siegenthaler and Gabriel Nistor collaborated on the study, which was supported by Geron Corp.; a UC Discovery Grant; the Roman Reed Spinal Cord Injury Research Fund of California; Research for Cure; and individual donations to the Reeve-Irvine Research Center.

UCI is a premier center for stem cell research in California. The University announced last week that it had received a $10 million gift from Bill and Sue Gross in support of stem cell research, including matching funds to construct an $80 million dollar Stem Cell Research Center Facility.

THE DERBY CITY NSCIA NEWSLETTER

Refrigerator Calendar
*2006

AUGUST

3rd - FFM Annual Sponsor/Volunteer Appreciation Dinner. Price & Contact info in Pres. Mesg.
Th - 909 W. Jefferson St.; LaGrange, KY; 6:00 p.m. (Appetizers) 6:30 (Dinner/Entertainment).

7th - Elderly & Disabled Advisory Council Meeting. Please note date change due to holiday.
Mon 1:00-2:30 p.m.; TARC; 1000 W. Broadway; Board Room.

17th - Derby City Chapter meeting; Frazier Rehabilitation; 6:30 p.m.
Mon 220 Abraham Flexnor Way, Louisville; 10th floor dining room.

15th - Metro disAbility Coalition Meeting; 1 p.m. – 3 p.m.
Sat PVA Office on Goss Avenue.

SEPTEMBER

7th - Elderly & Disabled Advisory Council Meeting
Mon 1:00-2:30 p.m.; TARC; 1000 W. Broadway; Board Room.

17th - Derby City Chapter Picnic; 12:00 ; In lieu of regular meeting
Sun Directions & further details provided in September’s Newsletter.

19th - Metro disAbility Coalition Meeting; 1 p.m. – 3 p.m.
Sat PVA Office on Goss Avenue

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

THE DERBY CITY NSCIA NEWSLETTER

The following are from NewMobility.com –ed.
NEW ART EXHIBIT HIGHLIGHTS WOMEN WITH DISABILITIES

On May 19 at the Dorsch Gallery, more than 500 Miamians were exposed to raw, au naturel photographs of women wheelchair users from around the world. Sponsored by Miami CIL, the Uncensored Lives — Raw Beauty exhibit showed many of the models nude and outside their chairs.

For Miamian Marjorie Burnettz, posing nude on the beach and then dressed as a mermaid allowed her to express herself in a way that society usually doesn’t allow a disabled person.

“That’s the main reason I did this,” Burnettz says. “I love the inspiration of the human body. I think the human body is very beautiful, and as disabled women, society doesn’t allow us to expose ourselves like everybody else.”

Asked if she was at all shy, Burnettz says, “No, but the photographer was. He was a student, and it was the first time he’d done anything like this.” The photographers were all nondisabled. To view several photos, go to www.rawbeautyproject.com Organizers are looking for gallery and local disability sponsors. Contact Vanessa Silberman, 786/554-9572 or vannysilver@yahoo.com

ROLLERCOASTING WHEELING

San Francisco’s hilly topography may not be your top pick for vacationing or living, but you may be surprised at how accessible Northern California’s coastline is for wheelchairs.
Writer Bonnie Lewkowicz, in conjunction with California Coastal Conservancy, traveled many of the 500 miles of coastline to update the free “A Wheelchair Rider’s Guide —San Francisco Bay and the Nearby Coast.”
“I was surprised by how many places were accessible,” says Lewkowicz, a C5-6 quad.
Contact the California Coastal Consevancy, 510/286-1015, or download a PDF at www.coastalconservancy.ca.gov.

REEVE’S CHAIR LANDS IN CHOP SHOP

When Dave Heim, founder of the Wheelchair Recycler and resident of Marlboro, Mass., got a call from the Christopher Reeve Foundation offering Reeve’s first wheelchair, he jumped at the chance. Heim’s organization rebuilds and fixes individual’s wheelchairs using donated chairs and scooters. Recipients are charged only if they can afford it. Heim stored Reed’s chair in a closet, planning to show it at parades and rallies to rise awareness. Then somebody’s chair needed the same type of piston’s as on Reeve’s chair. Then a chair needed some brackets and the vent tray. Then Heim met Joe Dunn.

“We got Joe a chair and used Reeve’s armrests, and I think it changed his life,” says Heim. “I think he was in a bit of denial. Knowing this was ‘Superman’s’ chair changed his perspective.”

Injured last year in a motorcycle accident, Dunn, a C4 quad, agrees. “I met Dave while I was in rehab. I was in my bed and didn’t have a wheelchair because the hospital didn’t have one for me to use,” says Dunn. “Dave enlightened my life. He knew I was in desperate need to be mobile and get my independence back — but it is cool to put my arms where Christopher Reeve’s were.”

Heim is in the process of downsizing his home and is looking for space to continue recycling. Contact him at 508/460-6328 or www.wheelchair-recycler.com

MOTORCYCLING: THE MISSING LINK

Jim Leatherman, a wheelchair user since childhood, never rode a bike. Then he bought a Gold Wing Honda that a previous owner had equipped with a wheelchair carrier.

“I never rode a tricycle, a bike, or a motorcycle, until a few weeks ago,” says Leatherman, who lost his legs just below the hips at age 6. “Now I can go anywhere by myself. The carrier’s given me the whole freedom to ride.”

Not content to hog the biker joy for himself, Leatherman worked with designer and avid Harley rider, Dana Fiege, to perfect the model. Now the carrier is made from stainless steel and attaches to a back fender on most trikes. The wheelchair is held in place with a bracket..

“We believe we’ve got the final piece of allowing wheelchair users to ride independently,” says Leatherman, who lives in Baltimore. For more information, contact Dana Fiege, Freedom Track, 410/917-0012 or www.freedom-track.com

THE DERBY CITY NSCIA NEWSLETTER

From the Internet—ed.

NANCY BECKER KENNEDY

In addition to complaining about her hair, dating, and staying thin just long enough to land another husband, Nancy Becker Kennedy plunges heart and soul into her one woman show, “I Had to Break My Neck to Get Here.” Unfortunately, that is true both literally and figuratively.

Injured in a diving accident at age twenty, Nancy suffered a broken neck with spinal cord injuries resulting. With the assistance of her electric chair, she returned to college to complete both a Bachelor and a Master’s degree in communications. She went on to become a news producer for public television, a published writer, and award winning writer and composer, as well as an actress appearing regularly for 2 1/2 years on General Hospital. She even became the first primetime player who is a quadriplegic appearing on the ABC series, The Louie Anderson Show.

Nancy is committed to opening doors. Combining her comedy and communication skills, she has made a powerful impact as a member of ADAPT (American Disabled for Attendant Programs) a civil rights organization that fights for the release of people with disabilities who are inappropriately locked away in nursing homes and institutions. With her comedy, she is opening another kind of door — the door to the heart that sometimes closes in fear when you see someone who uses a chair.

Becker Kennedy’s power with candor and warmth uniquely qualifies her to help college students deal with the discomfort that exists between the nondisabld and disabled worlds. Having spent equal time in both worlds, Nancy speaks with insight and authority. When asked how she can so comfortably answer intimate questions from the audience, she replies, “The deeply seated answer is that I’m unbelievably insensitive.” As you listen to Nancy give her presentation, you will know that is not true.

Nancy finds the “whole journey into the experience of disability endlessly interesting. It tells you so much about what we value in a society, and what really matters in the human experience.” She can answer questions on disability and sexuality, the meaning of life, and if light can escape from a black hole and whether Jesse, the nurse on General Hospital, really is a bitch.

A nationally recognized expert, Ms. Kennedy has been featured in and contributed to Ms. Magazine, The New York Times, The Washington Post, and The New Republic. She is also a contributing editor of the award winning national magazine, Spinal Network’

FOR SALE!!!!***

2 Electric Hospital Beds; Good Shape; $500 Each; Call Kenny Flood @ (502) 648-7335.

97 Mercury Sable LS; station wagon. Leather interior; 6-cylinder; 6-passenger seating; rear-facing third seat; Braun wc topper; Monarch hand controls. 93,000 miles. Price negotiable. Call Ruth @ 239-9754 after 5 p.m.

2001 Dodge Intrepid. 30,000 mi; leather interior; automatic transmission; Braun overhead wheelchair carrier & hand controls. Call Ruth at 239-9754 after 5 p.m.

*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; Invacare 900 Action Power Chair; 4 yrs. Old; $600. Call 448-5296.

*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.

NANCY BECKER KENNEDY, CONT’D

New Mobility. She has been on Sixty Minutes, Nightwatch with Charlie Rose, and A Closer Look with Faith Daniels. She is the first person to address the American Congress of Rehabilitation Medicine and edited the first consumer section of the Western Journal of Medicine.

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