SCI Network April 2005 Newsletter

Spinal Cord Injury Network

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SCI CONNECTOR April 2005

SCI NETWORK TRAINS NEW MENTORS FOR PEER PROGRAM

SCI Network volunteers conducted a peer mentor training on April 9th at the National Rehabilitation Hospital (NRH). SCI Network and NRH are two of the partners in the NIDRR funded Rehabilitation Research and Training Center (RRTC) on Spinal Cord Injury: Promoting Health and Preventing Complications through Exercise. The RRTC partners also include the Miami Project to Cure Paralysis at the University of Miami School of Medicine, the National Spinal Cord Injury Association (NSCIA), and Independent Living and Resource Utilization (ILRU) in Houston, TX.

Some of the peer mentors have previous experience in the NRH system; with the RRTC partnership in place, many will now join in our combined efforts around documenting the affects of peer mentoring on the prevention of secondary conditions through exercise. Mentors will receive additional training related to secondary conditions and will help to educate patients, other mentors, hospital staff and other professionals with regard to prevention. SCI Network provides information and referral, advocacy and visitation, peer and family support groups, attendant care referrals from our Personal Assistant Registry, an art gallery, website, monthly newsletter and other free services for persons with SCI and mobility impairing conditions in the DC Metro area.

SCI Network will conduct additional peer mentor trainings. SCI Network and RRTC staff are seeking other people with SCI to work and volunteer in several capacities. For further information about future trainings or the RRTC, please contact Brenda Gilmore at 202-877-1000 or email her brendagilmore@comcast.net. Contact SCI Network at 301-424-8335.

EXERCISE & PREVENTING SCI COMPLICATIONS LAUNCHES NEW SITE

The Rehabilitation Research and Training Center (RRTC) on Spinal Cord Injury: Promoting Health and Preventing Complications through Exercise, gladly announces the launch of its web site: http://www.sci-health.org. The new site is a joint effort of all RRTC partners, including the National Rehabilitation Hospital in Washington DC, the Miami Project to Cure Paralysis at the University of Miami School of Medicine, the National Spinal Cord Injury Association (NSCIA), the Spinal Cord Injury Network in Rockville, MD, and Independent Living and Resource Utilization (ILRU) in Houston, TX.

The RRTC team worked with HDI Publishers of Houston, TX in the development of the site, to ensure greatest accessibility and user-friendliness. A subsequent accessibility review conducted by a technical web specialist at the National Center for the Dissemination of Disability Research (NCDDR) found that the site was highly accessible – one of the most accessible websites in the disability research field.

The new site will provide ongoing information about research and training efforts with a focus on the prevention of secondary conditions through an active and healthy lifestyle. The goal is to make the website a portal for an array of resources on exercise and prevention for people with spinal cord injury (SCI), to include scientific and consumer publications and fact sheets, conference presentations, and research abstracts. The site will also feature multimedia content in the form of short videos and additional audio content. In addition, the site has links to transcripts of past Virtual Townhall Meetings (i.e., audio webcasts) and interactive ‘Ask the Doctor’ question and answer sessions on a variety of pertinent topics on SCI. In the near future, training manuals will also be available on the website. One will provide educational content for health care professionals as part of the Consumer Professional Partnership Program, and the other will provide a framework for training as part of the Peer Mentoring Program.

This RRTC is proud to incorporate participatory action research and training techniques in the RRTC projects. Team members are interested in receiving feedback from people with SCI and other visitors to the website. Please let us know what information you would find particularly useful with regard to the prevention of secondary conditions and exercise in SCI – visit www.sci-health.org and help us build a useful information, dissemination, and resource tool for individuals with SCI. Comments and questions can be directed to Mel Neri at Melinda.t.neri@medstar.net.

CLAUDE ALLEN, WHITE HOUSE AID TO KEYNOTE SCI SUMMIT

Bethesda, Md. - The National Spinal Cord Injury Association announced the ten inaugural inductees to the Spinal Cord Injury (SCI) Hall of Fame™ gala that will be held May 9, 2005 at 7:00 p.m. at the John F. Kennedy Center for the Performing Arts. The event will be preceded by a performance on the Millennium Stage at 6 p.m. The SCI Hall of Fame has been created to celebrate and honor those individuals that have made significant contributions to quality of life and advancements toward a better future for all individuals with spinal cord injury. These esteemed inductees and their categories are: Christopher Reeve, Benefactor; Teddy Pendergrass (PA), Entertainment; Marilyn Hamilton (CA), Entrepreneur; Senator Tom Harkin (IA), Legislative; Barry Corbet, Disability Awareness/Activism; John Hockenberry (NY), Media; Randy Snow (TX), Sports; Rory Cooper (PA), Assistive Technology; Duane French (WA), Corporate/Government Executive, and Wise Young (NJ), Research. Inductees were elected by NSCIA’s 13,000 members.

NSICA is delighted to announce that Claude Allen , Chief of Domestic Policy at the White House, will present the keynote address at the SCI Summit 2005: Facing Issues, Creating Solutions,™ which is being held in conjunction with the SCI Hall of Fame. SCI Summit 2005 will take place at the Mayflower Hotel in Washington, D.C. on May 9, - May 11, 2005.

The SCI Summit is designed to bring together leaders and stakeholders in the SCI/D field so that we can define common priorities and develop agendas for addressing them. Leaders in rehabilitation, research, health care, business, and disability advocacy will join those with spinal cord injuries and their families.

Participants will assess the state of SCI in five broad topic areas, formulate recommendations and develop action plans. The five key areas are: Rehabilitation, Research, Health Promotion, Community Living, and Technology. Results will be presented to top federal officials in disability policy areas and will provide the framework for a shared agenda among the various stakeholders.

For more information, to mregister, for a list of sponsoring corporations and organizations and sponsorship opportunities, go to www.spinalcord.org or call 800-962-9629.

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