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Granting Hope

Reprinted from PN August 2012

The PVA Education Foundation awards more than $250,000 in grants to help improve the lives of people with spinal-cord injury/disease.

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The Paralyzed Veterans of America (PVA) Education Foundation has announced the FY2012 grant awardees. The PVA Education Foundation supports the development of tools that share spinal-cord injury and disease (SCI/D) knowledge and improve the lives of people with SCI/D. 

Of the 19 applications the PVA Education Foundation Board of Directors received, eight new grants were awarded, totaling $259,531 in funding. Grants were given in four different categories: consumer, caregiver, and community education; professional development and education; assistive technology; and conferences and symposia.

Consumer, Caregiver & Community Education

Adaptive Athletics and College Sports and Wellness for Veterans with SCI/D 

Michael Hartley, PhD
University of Arizona
Tucson, Ariz.
$50,000 (one year)
 

As a leader in establishing veteran-friendly campus practices, the University of Arizona is committed to research and service to veterans.

In fact, the University of Arizona Adaptive Athletics is the nation’s most comprehensive collegiate wheelchair-sports program, offering five competitive sport teams:  men’s and women’s basketball, tennis, rugby, track, and road racing. Led by a team of professionals with unique expertise in rehabilitation, disability, adaptive athletics, and higher education, the project will integrate adaptive athletics sports and wellness camps with post-secondary education. Research-based outcomes of the wellness camps will explore the impact of sports in supporting veterans with SCI/D with an emphasis on transitions to higher education.

While adaptive athletics opportunities are increasingly available, few studies examine the impact during the transition into civilian and academic life. This project responds to the need for more educational research examining the role of adaptive athletics on the health, wellness, and identity of veterans with SCI/D. 

Offering an opportunity to examine the utility of adaptive athletics, the project expects to provide information that can define how veterans with SCI/D approach transition to civilian and academic life.

Evaluate the Design and Implementation of SCI Caregiver Training Program 

Peter Hunt, PhD

 Southern California Institute

for Research and Education


A grant from PVA is helping Kelly Waugh, PT, MAPT, ATP (left) develop a comprehensive Glossary of Wheelchair Terms and Definitions.

Long Beach, Calif.

$50,000 (one year) 

 

Receiving proper training and education is the key for caregivers to help veterans with SCI to live independently in community settings.

A well-designed and properly implemented caregiver training program has the potential to reduce caregiver burdens and enhance job satisfaction.

The primary goal of this project is to involve caregivers and veterans with SCI in the evaluation of the design and implementation of a comprehensive skill-based SCI caregiver training program called HANDS. The secondary goal is to determine if participating in the HANDS training program will have a positive impact on caregivers’ general health and job satisfaction.

This project will take place at the VA Long Beach SCI Center and its spoke sites in greater Los Angeles and Loma Linda, Calif.

Professional Development & Education

Today’s MS Therapist: Teaching Self-Management Interventions 

Cinda Hugos, MSPT

Oregon Health & Science University

Lake Oswego, Ore.

$14,688 (one year) 

 

The goals of this grant are to present full day physical and/or occupational therapist training programs on multiple sclerosis (MS) at four sites.

Due to new medications and improved medical management, many people living with MS benefit for longer periods from rehabilitation intervention. In the present healthcare system, therapists have limited resources for continued education. The grant provides the availability of low-cost comprehensive training on interventions for major MS symptoms. A full day of multimedia presentations — including slides, videos/DVDs, website information and participant discussion — will highlight new treatments, proven techniques and web-based information sources. Comprehensive handouts are provided for workshop attendees on literature, sources and evaluation tools. The nationally recognized directors have a proven track record with the PVA Education Foundation, National MS Society, Consortium of MS Centers and the VA MS Center of Excellence–West in providing excellent professional education.

Wheelchair Transportation Safety Fundamentals Course 

Ashli Molinero, DSc

University of Pittsburgh

$49,876 (one year) 

A wheelchair provides opportunity for increased participation in quality-of-life activities such as education, employment, recreation, and access to healthcare for many individuals with SCI/D.

Inaccessible and unsafe transportation is a barrier to participation in those activities. Wheelchair-seated passengers are at greater risk of injury than vehicle-seated passengers. Many advances in wheelchair transportation safety research, product, and standards development have been made over the last decade.

Despite these advances, many rehabilitation professionals and consumers do not have the awareness and knowledge of wheelchair transportation safety technologies and their proper use. Research indicates an explicit need to educate those who evaluate clients and recommend wheelchairs, as well as consumers, on wheelchair transportation safety products, standards and best practices.

In an effort to address this critical knowledge gap, the objective of this project is to develop a structured, in-depth, open-source, continuing education course entitled “Wheelchair Transportation Safety Fundamentals.” 

Promoting the Adoption of Uniform Wheelchair Seating Terminology 

Kelly Waugh, PT, MAPT, ATP

University of Colorado/Anschutz

Medical Campus

Denver

$49,967 (one year) 

The field of wheelchair seating is interdisciplinary, and clear communication is critical to effective decision-making and positive outcomes for the consumer. A common vocabulary of terms and measures is needed for accurate translation of assessment information into a seating prescription and for effective setup of the prescribed product.

Phase 2 of this two-year project will develop and disseminate a comprehensive, searchable Glossary of Wheelchair Terms and Definitions containing approximately 450 terms used in this field, extracted from multiple sources including several existing national standards. The purpose of this glossary is to provide a comprehensive list of standardized terms that can be widely disseminated and easily accessed by all stakeholders.

We will also develop and deliver multiple educational programs to support the adoption and use of the Clinical Application Guide to Seating Measures developed in Phase 1 of this project, as well as this Glossary of Terms.

Assistive Technology

Assistive Technology Demonstration Project 

Adele Marano, LCSW

The ALS Association Greater

New York Chapter

New York

$20,000 (one year) 

The ALS Association Greater New York Chapter’s Assistive Technology Demonstration Project is designed to assist people with ALS (Lou Gehrig’s disease) in identifying the appropriate medical and/or augmentative communication equipment to continue to be independent for a longer period of time and enhance their quality of life.

ALS is a progressive, fatal neurodegenerative disease. While there is currently no known cure, studies have shown with proper nutrition, medical care and assistive technology people with ALS (PALS) can live longer and more comfortably.

Through this program we are able to improve the quality of life of PALS by assessing each person’s individual needs, demonstrating various medical and/or augmentative communication devices, allowing them to try the devices and assisting in selecting the appropriate equipment that will allow them to remain more independent, mobile and communicative than would be possible without the assistive technology.

Additionally, the program offers in-service training by our professional staff to other healthcare facilities.

Conferences & Symposia

SCI Lecture Series and Symposia

Michele Bart
HeadNorth

 Del Mar, Calif.

$10,000 (one year) 

 

HeadNorth will host a series of unique educational forums designed to bring together SCI survivors and their families; caregivers; healthcare, rehabilitation and social service providers; as well as young researchers.

The lecture series will be led by scientists on the leading edge of spinal-cord regeneration research sharing findings and resources to SCI survivors and their caregivers as well as offering an opportunity for questions and answers about their research work. The goal of the series is to facilitate access to the latest information and resources available, to promote quality-of-life initiatives and to mobilize the SCI community to advocate on behalf of promising research.

Additionally, HeadNorth will hold a one-day symposium with 65–70 postdoctoral fellows, graduate students and junior faculty to share biomedical and health-related research findings and challenges, providing them an opportunity to exchange ideas and expand scientific knowledge. By current estimates, more than 3,000 SCI survivors are in San Diego County, and an average of 120 people sustain new spinal-cord injuries each year. The San Diego area is the hub of a number of leading research institutions including UCSD, Scripps, Salk Institute and the Department of Veterans Affairs (VA).

Working 2 Walk Science & Advocacy Symposium 2012 

Marilyn Smith

Unite 2 Fight Paralysis

Hood River, Ore.

$15,000 (one year) 

Working 2 Walk (W2W) is a science and advocacy symposium hosted by Unite 2 Fight Paralysis (U2FP).

It was conceived in response to a need voiced by individuals and organizations in the SCI/D community: We must bridge the informational gap between research scientists who are working to restore function, and those who live with paralysis on a daily basis. The SCI/D community must become more visible, vocal and informed in order to advocate effectively for therapies that will restore function and improve lives.

Working 2 Walk 2012 will take place in Irvine, Calif. Among other topics it will highlight the outstanding research being conducted at the Reeve-Irvine Research Center (RIRC). Following the two-day symposium, attendees will have an opportunity on day three to tour the RIRC lab facilities.

Working 2 Walk provides a unique opportunity for research scientists, investors, practitioners, and consumers to share their hopes, concerns, and strategies in a relatively intimate environment. The general and breakout sessions offer numerous opportunities to ask questions, give feedback, and interact one-on-one.

Participants leave the conference armed with knowledge, strategies, and motivation to pursue solutions to the neurological puzzle of spinal-cord injury and disease.  

 

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Granting Hope

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