CPD seeks study participants

October 30, 2012 by Sue Reeves

A new study to find out more about the evacuation behaviors of people with mobility-related disabilities is seeking research subjects. Individuals who have a physical or sensory impairment that affects their mobility are encouraged to participate.

The results of the study, which is being conducted by Dr. Keith Christensen at Utah State University’s Center for Persons with Disabilities, will be used to create buildings that better support individuals with disabilities during emergency evacuations.

Individuals accepted into the study will be asked to come to the USU campus for about two hours on either Nov. 9, 15 or 17. Participants will complete a short survey and walk around a circular track containing items typically found in a building such as doorways, corners and other people. Participants may be asked to walk up and down a typical length of stairs, if appropriate. Movement will be measured using a video tracking system, and there will be frequent opportunities to rest. Participants will be compensated with a $100 Visa gift card.

E-mail Christensen at evacstudy@cpdusu.org for more information or to apply for the study. Applicants will be contacted for additional information, and if accepted, will be scheduled for the study.

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New collaborative on multiple sclerosis aims to slow progression of disease

October 29, 2012 by Storee

Despite significant progress in the development of treatments for people with relapsing forms of multiple sclerosis (MS), there are few treatment options for people with progressive forms of MS. The newly formed International Collaborative on Progressive MS has published an opinion paper outlining challenges in developing therapies for progressive MS and identifying key research priorities to propel efforts to stop MS progression. National MS society

The Collaborative is the greatest effort to date aiming at speeding research on progressive MS, and is formed of the MS Societies of Canada, Italy, Netherlands, the UK and the US, and the MS International Federation. The paper, by lead author Robert J. Fox, MD (Mellen Center for Multiple Sclerosis, Neurological Institute, and Lerner College of Medicine, Cleveland Clinic) and colleagues, identifies five key priority areas for research, and was published in the Multiple Sclerosis Journal (Online First, August 23, 2012).

“Overcoming the challenges of progressive MS is a key objective of the Society’s Strategic Response to MS,” says Timothy Coetzee, PhD, Chief Research Officer of the National MS Society and member of the Collaborative. “This is just one of the ways we’re collaborating worldwide to speed clinical trials in progressive MS.”

The hopes of most people who have MS today rest on finding a way to stop disease worsening and reverse the damage to restore lost functions. MS progression can be slow or it can be fast, but most agree that it occurs in the majority of those who have the disease, even those successfully treated for relapses.

There’s been a great deal of progress in treating relapsing forms of MS, with many FDA-approved therapies. But for every new therapy approved for relapsing forms of MS, people with progressive MS, for whom there are few significant treatment options, feel left behind. Virtually every therapy approved for relapsing MS has been tested, or is now in testing, in people with progressive forms of the disease. Up to now, clinical trials involving people with relapsing MS often rely on counting relapses or doing MRI scans to detect immune activity. The fact that there is no easy way to detect progression quickly is one reason why drug development for progressive MS is behind.

The mission of the International Collaborative on Progressive MS is to expedite the development of effective disease modifying and symptom management therapies for progressive forms of MS. To do so, research efforts are needed on several fronts to lay the groundwork needed to identify possible therapeutic targets and conduct clinical trials aimed at stopping progression of the disease.

For Utahns with MS looking for help, the National Multiple Sclerosis Society Utah-Southern Idaho Chapter has a new local representative, Chelsey Banks. Contact her at 801-424-0113 or by email at Banks@NMSS.org. Learn more about the organization at www.cureMSutah.org and www.cureMSidaho.org.

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URLEND, IDASL trainees attend conference

October 24, 2012 by Sue Reeves

Trainees from two projects with the Center for Persons with Disabilities attended a major conference in Houston, Tex., last week without ever leaving home. The two-day conference, originating from Baylor Medical Center, focused on challenges and supports available to transition youth with significant medical issues from pediatric to adult care, said Dr. Judith Holt, co-director of the Utah Regional Leadership Education in Neurodevelopmental and Related Disabilities (URLEND) project. Significant medical issues, Holt said, could include chronic medical conditions such as cystic fibrosis or cardiac problems to developmental issues like autism.

“Attendance at the conference was not required, but the trainees can use the hours toward meeting their overall hour requirement,” Holt said. “It’s an example of the opportunities the trainees have here at the Center for Persons with Disabilities.”

According to Holt, only a few members of the 2012 cohort of 48 trainees attended portions of the conference in the CPD’s distance learning room, but many more viewed it from eight different URLEND sites in five states. Trainees from the CPD’s Interdisciplinary Disability Awareness and Service Learning (IDASL) project also attended.

URLEND trainees participated in the 13th annual conference by invitation, Holt said, and the program was able to utilize a single access code for all of the sites because the trainees were so spread out.

“I was really very impressed with it,” Holt said. “The speakers were excellent. It’s another opportunity for trainees in our programs to participate in high-level conferences on significant topics.”

URLEND trainees from a variety of disciplines are brought together with faculty and families of children with special health care needs to form an interdisciplinary learning cohort. Each long-term trainee participates in didactic (classroom) learning, leadership research, and clinical learning. Disciplines include pediatric medicine, genetics, and dentistry; psychology; social work; nursing; audiology; pediatric audiology; health administration; nutrition; special education; speech and language pathology; occupation therapy; and physical therapy.

IDASL provides opportunities for students, as well as individuals with disabilities and family members of children with disabilities, to become part of interdisciplinary teams. These teams, with faculty mentors, provide services and supports to children with disabilities and their families, as well as adults with disabilities.

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TAESE organizes popular Tri-State Law Conference

October 22, 2012 by Sue Reeves

Two days filled with discussions of case law may seem dull to some people, but the participants of the Tri-State Regional Special Education Law Conference are eager to soak up every word. The conference is organized by the CPD’s Technical Assistance for Excellence in Special Education (TAESE).

“The stakes are high,” said Martin E. Blair, TAESE associate director. “If legal information is wrong, lawsuits can result, but more importantly, it affects services that children receive. If (administrators) get it wrong, kids may not get what they’re entitled to get to be successful in school. We want to address that.”

The conference is designed for general and special education administrators and teachers, service providers, parents, advocates, lawyers and others involved in developing and supporting special education services for children with disabilities and their families.

“One of the things we do is organize professional development conferences and events,” Blair said. “We work with the state office of education or any other group to put together their conferences, get the speakers, advertise the event, and do on-site management.”

TAESE has been organizing law institutes for more than a dozen years in Utah and other states, Blair said. Nebraska was doing its own conference, but organizers decided about eight years ago they wanted to attract national-level speakers. Soon Iowa and Kansas expressed interest, and the Tri-State Law Conference was begun.

Blair said the law conferences continue to grow, even though the Individuals with Disabilities Education Act (IDEA) has not been reauthorized by Congress since 2004.

“The law hasn’t changed, but interpretations by school districts and the courts continue to change the way we interpret special education,” he said. “Special educators and administrators are hungry for the newest information. They want to provide the best and most legally appropriate services to children and their families.”

This year, participation in the conference was capped at 600 and registration closed a month early. There are dozens of names on the waiting list. About a third of the participants are from Nebraska, about a third from Kansas and the rest from other states.

“People love it,” Blair said. “There are national level speakers. Attorneys come back year after year to present on case law, mediation and special education legal issues.”

For more than 30 years, TAESE has been the technical assistance division of the CPD at Utah State University. TAESE provides technical assistance in special education and to build the capacity of State Departments of Education, school districts, and charter schools to better serve infants, toddlers, children, and youth with disabilities.

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Lil’ Marv featured at Pumpkin Walk

October 19, 2012 by Sue Reeves

The Center for Persons with Disabilities’ own Lil’ Marv stars in the Up to 3 program’s display at the North Logan Pumpkin Walk this weekend. In keeping with this year’s theme, “Let the Games Begin,” the blue bull sculpture plays tug o’ war with child-size stuffed figures, some using assistive technology.

The Child Find Committee thought the Pumpkin Walk display would be a good way to help identify children who need services, said Karen Cox, staff assistant for the Up to 3 program. Thousands of spectators are expected during the five-day event.

“We take the ABC class to the Pumpkin Walk every year,” Cox said, and the staff has been mulling the idea since last year’s walk. After discussions during staff meetings, the tug o’ war theme was chosen, then eventually approved by the Pumpkin Walk committee.

Assembling the display was definitely a joint effort, Cox said. She stuffed all the bodies, volunteers from Aggie Advocates and the Council for Exceptional Children helped paint the pumpkin heads, staff members attached all the hair and Director of Exemplary Services Sue Olson made Lil’ Marv’s blanket. In the end, though, it was all trial and error.

“We tried this, we tried that. We used lots of wire, lots of glue on the hair,” Cox said. “It’s up and it’s cute and it’s fun and it fits with our theme. It’s been a lot of fun.”

The Up to 3 program serves approximately 1,000 children across three Utah counties. Up To 3 provides early identification and developmental services for families of infants and toddlers, ages birth to three, both in the home and in preschool settings.

Visit our Facebook page to see more photos of the Up to 3 Program’s 2012 Pumpkin Walk display.



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