The results of this ground breaking study will form the basis of Sharon Dawson’s Masters’ thesis. Once compiled, generic results will also be provided to Muscular Dystrophy Queensland giving us greater insight into the current unmet needs our families face.

We hope to link approximately 50 people with the survey and encourage each carer in their household to consider completing the survey, which is available online and can also be provided in paper format for those without internet access.

If you are a carer of a person with a neuromuscular condition, find out more about the survey by reading the Questionnaire Information Sheet or start completing the survey online. If you require the survey in paper format please contact us.

Art Union 64 was drawn on 22 March 2012.  Congratulations to our lucky winner who receives the major prize of $25,000 in cashable gold bullion.

Our AU64 winner is a longtime supporter from Northern Qld. The winning ticket number is 8041.

Our $1,000 Auto Order winner is a couple also from North Queensland, and also long time supporters.

Buy tickets in the next Art Union for your chance to win!

Our monthly teleconferences are open for anyone interested to dial in, just to listen or join the conversation. Would you like to dial in?  Call 1800 701 193 from 11am on Wednesday March 21. Enter security code 405882# when prompted.

A schedule of all teleconferences for 2012 is available online. Recordings of past teleconferences are also available on our Vimeo channel (links open in a new window).

March 4 MD was a great success. The rain held off and we made our way up to the Queen Street Mall and then back to the Botanic Gardens. Thanks to everyone who was able to make it along on the day. Photos are now online (opens to a new window).

Bradley Launikonis, Head of the MD Muscle Research at the University of Queensland, has recently been granted approval from the ethics committee to use archived muscle biopsies in his research.

Muscular Dystrophy Queensland are proud to have supported this promising research which studied calcium regulatory properties of mouse skeletal muscle, comparing tissue from healthy mice with that from dystrophin-deficient MDX mice. One finding was of an increase of specific proteins in MDX mouse muscle, which seem to enable compensation for lack of dystrophin, allowing the muscle function to be somewhat normal in the MDX mice.

Brad is interested in determining the levels of these three proteins in the muscle tissue of individuals who have MD and particularly in individuals with Duchenne MD, as this most closely resembles the MDX mouse model used in his research.

In the coming weeks, we will be contacting our clients who volunteered their muscle biopsies in order to have them sign a release from, enabling Pathology Queensland to release the biopsies to Brad and his team of researchers.

If you haven’t registered your interest in volunteering a muscle biopsy and would like to do so, please contact Rick Carr by email or on 07 3607 1800.

“The 100km ride from Brisbane to Caloundra will start at the Muscular Dystrophy Queensland office at Hendra with a delicious breakfast, before riders head off with experienced guides for the ride to Caloundra.” said Samantha Cox of Muscular Dystrophy Queensland.

Funds raised from the event will assist people living with muscular dystrophy and neuromuscular conditions, through a range of comprehensive services including information and referral, advocacy, equipment, respite services and vital research initiatives.

In 2010, Muscular Dystrophy Australia held a bike ride from Brisbane to Sydney, successfully raising over $800,000.  “The Ride 4 MD from Brisbane to Caloundra is an opportunity for less experienced cyclists to get involved, with the same result of raising much needed funds for our clients in Queensland. Non-cyclists can lend their support too, by sponsoring one of the riders taking the challenge” said Ms Cox.

The ride will take place on Sunday, November 20th, 2011.

Registration is $100 and includes a team riding jersey, t-shirt, water bottle and a bag of goodies. For more information, contact Muscular Dystrophy Queensland on 07 3607 1800 or go to www.ride4md.org.au

Contact Information:

Samantha Cox

Fundraising and Event Co-ordinator

Muscular Dystrophy Queensland

07 3607 1800

samanthac@mdqld.org.au

Muscular Dystrophy clients are able to borrow up to $2,000 to purchase items that would otherwise not be able to access via fair and equitable means.

NILS may be used to purchase essential items such as medical equipment or educational needs. It may also be used for household items such as a refrigerator, washing machine or air conditioner. Or it may even be used for items that would enhance a client’s quality of life, such as a DVD player, digital TV or computer. Perhaps even a special day out that the family would not otherwise be able to afford if not for the NILS.

A small loan of $500, for example, would have minimal repayments over 24 months of less than $21 per month.

Find out more, contact Marianne or one of the Client Services Team on 07 3607 1800 if you would like to benefit from this scheme.

This issue includes:

• Strong defence earns the Queensland Gladiators rewards at NEWS
• Farewell to Bren Arkinstall
• Ethical approval granted for researcher Brad Launikonis
• MD Queensland farewells our friend - Bill Duyvestyn
• NDIS Latest News - Your stories and your input counts now
• Myasthenia Gravis study results to help three fold
• FSHD group calling for members
• NILS loans for lifestyle too
• Growing Stronger update - Phase II commences on 4 July 2011
• Social media helps HOG ride sell out
• Talking with Tristram
• International registry expands to serve more people with congenital muscle diseases
• Current employment opportunities with Muscular Dystrophy Qld
• Teleconference ‘Childrens’ Neuromuscular Clinic’
• Our upcoming events

If you’d like to receive print or email copies of news updates like our newsletter, and are not currently on the mailing list please email us and we’d be happy to include you.

The results will be used to promote greater awareness of the condition as a health issue, data collected will be used to determine the future direction of research into MG and associated health issues and the results will also be presented to government agencies with the aim of sharpening the government’s focus on disability related socio-economic issues. As worldwide research into MG is limited, the findings of this survey are expected to stimulate further research and interest.

Although initiated in Queensland, the survey will be available Australia wide the with hope of having as many Australians living with MG complete the survey as possible, and offers people with MG the rare opportunity to fully explain their medical journey and how their condition has impacted on their lives.  The findings will be made available on the MGAQ’s website and in their newsletters.

Participants of the study will be asked questions regarding their illness, the medical therapy of it and the impact it has had on work, family and lifestyle.  An additional medical questionnaire will also require endorsement from each participant’s specialist and an extended timeline has been factored into receiving survey results so as to enable participants to wait until their next routine specialist appointment to have the endorsement completed. MGAQ will also be providing telephone support to answer any queries raised when completing the survey, in addition to all required documentation and reply paid postage to return the completed forms.

The information collected will be treated with the strictest confidentially, only available to the three main researchers involved; Prof. McCombe, Dr. Gillis and Dr. Blum, before it is encoded for data entry and further analysis by other researchers involved in the project.

If you have MG and are interested in participating in this confidential study, please contact MGAQ on freecall 1800 802 568 or visit the Myasthenia Gravis Association of Qld Inc website.