The Disability Information and Resource Centre

Dr Nora Shields and Prof Nick Taylor are research physiotherapists working for La Trobe University. They are running a study to find out if community-based programs for young people with Down Syndrome can improve in their strength and performance in certain physical activities.

What is involved?

Your child would be allocated at random to either an exercise group or an arts/social group.

The exercise group participants will be teamed up with a student mentor. This will be a physiotherapy student who will exercise with your child at a local gym, twice a week for 10 weeks for approximately 45 minutes to 1 hour. The days and times of training will be decided in consultation with you.

The arts/social group participants will also be teamed up with a student mentor. This will be a physiotherapy student who will meet with your child at your home or a community venue, once a week for 10 weeks for approximately 90 minutes. The days and times of these sessions will be decided in consultation with you.

The strength of your child will be measured before they start the program, after it finishes and again 3 months after the program.

How much will it cost?

The researchers will cover the cost of both programs and will contribute a small amount towards the cost of travel associated with the project.

Who will be taking part?

Young people with Down Syndrome aged 14-22 years and physiotherapy students.

Who is organising this study?

Dr Nora Shields and Prof Nick Taylor are research physiotherapists working for La Trobe University. Elin Wee is a physiotherapist who is the research officer in this project. They are working together with Down Syndrome Victoria to run this project.

Further Information

If you are interested in taking part or have any further questions contact Elin Wee on (03) 9479 5258 or e.wee@latrobe.edu.au

An Invitation to Participate in Research

Children and adolescents aged between 10 and 15 years are sought to participate in a doctoral research project investigating the influences of social and cognitive skills on behaviour. This study will involve participants being presented with a range of different interesting tasks and activities. This study will also involve parents/guardians completing a questionnaire about their child’s behaviour.

Further Information

Miss Laura Smith
School of Psychology
Deakin University, Burwood Campus.
221 Burwood Highway (Building W).
Burwood, 3125 VIC

lsmi@deakin.edu.au
0413 119 231

The Channel 7 Children’s Research Foundation (C7CRF) is inviting researchers in South Australia and the Northern Territory to apply for grants to help find the answers to serious conditions that affect children, such as cerebral palsy, asthma and muscular dystrophy.

Grants of up to $75,000 will be awarded to successful applicants for research projects to be undertaken in 2011.

Applications opened on 4 February 2010 and close on 29 April 2010.

For more information please see the C7CRF Media Release or the C7CRF Web Site.

Mr. Ted Evans, a PHD student in the Department of Disability Studies at Flinders University, is undertaking research on the subject of “An exploration of the expectations, needs and experiences of people with disabilities participating in Community Access Services in Australia”.

Mr. Evans is seeking volunteers to participate in a short interview on the above subject. Any information provided in the interview will be treated in the strictest of confidence.

Please view Mr. Evans’ Letter of Introduction and a Participant Information Sheet for the interview.

For further information please contact Brian Matthews, Senior Lecturer, Department of Disability Studies.

Disability Studies
Flinders Clinical Effectiveness
School of Medicine
Faculty of Health Sciences
Sturt Buildings
GPO Box 2100
Adelaide SA 5001

Ph: 8201 3448
Email: Brian.Matthews@flinders.edu.au

Liyana Mohamed Yusof, a University of Adelaide Masters Architecture student from Malaysia is conducting research into accessibilty of public parks. She is seeking information from people who use a wheelchair on their opinions and experience of accessing public parks in Adelaide, South Australia.

Her supervisor is Dr David Jones  david.jones@adelaide.edu.au

Project Title

Accessibility for Wheelchair Users in Public Parks: A Comparison between Adelaide and Kuantan

Project Summary

As a developing country, Malaysia has demonstrated an active role in the efforts of providing equal opportunity for people with disabilities through its new legislation, the Persons with Disabilities Act 2008. However, consideration of equal accessibility to outdoor environments in Malaysia is still lacking. Accordingly, the aim of this research is to investigate the appropriateness of key criteria applied for people with disabilities, particularly for wheelchair users in public parks in Australia, for the Malaysia context. A comprehensive investigation of the needs, anthropology and appropriate materials for wheelchair users as well as Malaysian and Australian guidelines, standards and legislations for people with disabilities will be undertaken in this research. It is hoped that this research will increase the awareness of the needs of people with disabilities in public parks among Malaysian architects, landscape architects, planners and local authorities. Significantly, the understanding from the research will contribute to increasing the quality of life of people with disabilities socially, mentally and spiritually.

Click on this link for the survey questions PublicParksWheelchairAccessibility

Please complete the questionnaire and attach it to an email and return to Liyana. Her email address is: liyana_y@yahoo.com

This is an excerpt from the eBulletin of  ME/CFS Australia (SA).

This has been a big week in ME/CFS communities around the world, with a rather sensational announcement by the Whittemore-Peterson Institute in the USA.  [Many will remember Dr Dan Peterson who spoke at Norwood Town Hall last year, and told us then of his new project at the Institute part-named in his honour].

The institute announced that they had detected the retroviral infection XMRV in ME/CFS patients.   They tested ME/CFS patients and found initially almost 70% had evidence of XMRV infection.  More specific testing later on found the number climbed to about 95% of about 100 patients with ME/CFS who tested positive to XMRV or antibodies to XMRV. The numbers among the control group were under 4% of over 200.

www.wpinstitute.org/xmrv/index.html

Also an informative Q&A on this at

www.wpinstitute.org/xmrv/xmrv_qa.html

On the face of it, this looks very promising. If only ME/CFS patients had a viral infection, and the general population did not, then it would look like we had found either a cause or an effect of ME/CFS. However, we have all learnt to beware of first announcements. We have been down similar paths with Epstein-Barr virus, HHV-6 – and others.

This discovery does look more convincing than any previous, but we now know that ME/CFS patients are not the only people showing high levels of infection by the XMRV virus. Fibromyalgia patients tested by the US team also were over 90% positive for XMRV. Those of us with both ME/CFS and fibromyalgia won’t be surprised in the least by that, since we know there is a huge crossover.  But we also know now that Atypical MS patients have tested positive for XMRV. So, maybe this virus is something that is implicated in a range of auto-immune disorders.  In any case, I recommend that you read the UK ME response for a thoughtful response:

www.meassociation.org.uk/content/view/1042/161/

In fact, if you read the whole of the Q&A page at the W-P Institute site, you will see that they also recommend not jumping to conclusions (especially about whether and how XMRV may be “caught”) at this preliminary stage. In summary, these are exciting initial findings and we need follow-up as soon as possible, but we should be cautious about making too much of them yet.

Meanwhile there is a discussion on this topic happening on our Facebook site:
www.facebook.com/topic.php?uid=44893280104&topic=11145

And Peter Scott, our web manager par excellence, is keeping us up to date with all the media responses [there have been many] at  http://www.sacfs.asn.au

“Using the internet to increase physical activity in teenagers with cerebral palsy – are you kidding?” by Dr Carol Maher, is the third lecture in the Women’s & Children’s Hospital Foundation’s 2009 New Science Seminar Series.

The free session, to be held on Wednesday 22 July at 10.30,  goes for about an hour and will include a light morning tea and an opportunity for Q & A.

The presenter is a 2008 Young Investigator Awards (YIA) finalist. The presentation will be a snapshot of her research findings in everyday language.

Queen Victoria Lecture Theatre
Ground Floor of the Queen Victoria
Building at the Women’s & Children’s
Hospital, 72 King William Rd, North Adelaide
Gold coin donation appreciated
For more information contact:
rani.clark@wchfoundation.org.au
or phone (08) 8464 7900

RSVP’s are not required.

Invitation flier (pdf)

On Friday 31st July there will be dance to help raise funds for prostate cancer research. The money will benefit the Flinders Medical Centre’s research efforts to find a cure.

The dance will be held at the West Croydon and Kilkenny RSL Hall, 19 Rosetta St, West Croydon at 7pm. It’s a ‘bring your own supper’ affair. Bar facilities will be available (all drinks at RSL members prices) so there will be no BYO drinks.

The music will be by the Party Cats, Adelaide’s number 1 50’s and 60’s rock and roll duo, comprised of Peter Tilbrook (formerly of The Masters Apprentices) on vocals and lead guitar, with Brian “Davvo” Davidge on bass and backing vocals.

The theme is Doctors and Nurses with a prize for the best dressed doctor and nurse.

Tickets must be purchased before the event and are only $15. Contact Gwen on 0407 910476 or via email: gillmooreinc@bigpond.com to order tickets.

Are you are a young person (12-25 years) caring for a parent or familiy member with a disability or long-term illness?  OR

Do you currently receive care from a young family member?

The Social Policy Research Centre at the University of New South Wales is looking for people who are interested in talking about their caring experiences to participate in a study.

The first aim of the study is to hear from young people who provide care and from people who receive care about their circumstances, experiences and support service needs.  The second aim is to assist governments and community organisations to develop policies and services to support young carers and their families.

The study will involve an individual interview of about one hour’s duration either face-to-face or by phone and completion of a short questionnaire of about 15-20 minutes. Inteviews are expected to take place in July 2009 in South Australia and October 2009 in NSW.

For more information please contact Samia Michail on (02) 9385 7800 or email  s.michail@unsw.edu.au