Lady Sallie Ferrall

 

People who have a long association with MND in Tasmania were saddened to hear of the death of the Patron of MND Tasmania, Lady Sallie Ferrall, on September 10. Lady Ferrall was an active Patron of the Association, hosting the memorable annual Christmas Parties in her gardens at Quamby and Elphin House until recent years.

Her proactive support for people living with MND in Tasmania started over 30 years ago when her first husband, John Barnett, had MND. She initiated informal meetings and networks which resulted in the first public meeting at her home at Quamby on October 15 1985 to consider the formation of a society for people with MND in Tasmania.

After the incorporation of The MND Association of Tasmania on December 9 1986, Sallie was the Fundraising and Publicity Officer on the 11 member Committee. Another memorable milestone occurred on March 17 1996 when one of Sallie and John's four sons, Guy, was elected President of The MND Association of Tasmania.

We are very thankful for Lady Ferrall and her vibrant personality, passion and drive which resulted in the birth, growth and development of an organisation to support people and their families living with MND in Tasmania. Our sympathy is with her sons and their families at this time.

Rhoda Gill, spokesperson for the Multiple Steps Forward consumer group, has been working with MS Tasmania staff over the past few years to put together a pamphlet on ‘Driving with MS and other neurological conditions’. Rhoda has been unflagging in her efforts and MS Tasmania was pleased to launch the project on World MS Day – Wednesday 27 May – at RACT House.

This pamphlet would not have been possible without the collaboration of the Registration and Licensing team from the Department of State Growth.

RACT were approached to assist MS Tasmania with the launch. RACT decided to co-brand the pamphlet and will use this as a resource within their business.

Kathy Stocks, RACT Community Engagement & Education Manager arranged for the CarFit program to be run following the launch. Kathy is happy to complete group education sessions and then roll out the RACT state wide CarFit program in summer when the weather is more clement.

What is the CarFit program? Further information about CarFit Sessions is included in this publication.

RACT offer the service state wide it’s just a matter of finding an under cover area for inclement weather.

Please note that CarFit is not an assessment of individuals’ driving ability. The service provided is free of charge.

Click here to download part 1 of the pamphlet

Click here to download part 2 of the pamphlet

The search for new risk genes and therapies to treat motor neurone disease (MND) is set to accelerate with the announcement of the $1.05 million MND Australia Ice Bucket Challenge Grant that will bring together clinicians and researchers from Australia’s leading MND centres.

This is the largest collaborative MND project to be undertaken in Australia. It will be led by Professor Naomi Wray of the University of Queensland’s (UQ) Queensland Brain Institute and Associate Professor Ian Blair of Macquarie University, NSW.

“Who would have thought that buckets of icy water would be such a powerful weapon against MND? We thank every one of the 30,000-plus soggy Australians who helped to catapult MND into the global spotlight and donated to advance MND research.” says Professor Matthew Kiernan, Chairman MND Research Institute of Australia Research Committee.  

"This collective goodwill has enabled the largest grant ever awarded by MNDRIA, which will underpin future research and allow people living with MND to benefit from advances made through genomic medicine.”

The Sporadic ALS Australian Systems Genomics Consortium (SALSA-SGC) comprises sixteen researchers from nine MND centres across Australia as well as international collaborators who will work together to build an integrated infrastructure for the collection and analyses of biological samples and clinical data. This pooled expertise will lead to a better understanding of the causes of sporadic MND.

According to Professor Wray the biology of MND is complex and poorly understood, but there have been important advances in MND research in the past five years.

“These advances have been driven, almost entirely, by gene discoveries from the small number of families with more than one affected individual,” she says.

For the vast majority of those with MND the diagnosis is sporadic, meaning they are an isolated case with no family history of the disease. 

Recent developments in technology have revealed that people with sporadic MND may have genetic changes that could be risk factors for MND. SALSA-SGC aims to collectively identify new risk genes through whole genome analysis.

"Each new risk gene that we identify tells us a little more about MND and is potentially a new therapeutic target," says Professor Wray.

Click here for more detail

On November 9 2013 the Lions 34th District 201T1 Convention was held in Wynyard. The invited guest speakers were Kerry and Sharon Upchurch who presented their story of living with MND. They received a standing ovation.

They have agreed to their story being released on the MND Tasmania website.

Click here to read their speech

 

Earlier this year, MND Victoria successfully applied to Tasmania Medicare Local (TML) Care Coordination Program for funding to continue to deliver the Regional Advisor Service in Tasmania. The funding is provided by the Commonwealth Government to implement the Care Coordination Program and targets four types of chronic disease including Neuro-degenerative Disorders. The Care Coordination Program includes flexible funding that can be accessed to address any urgent unmet support or equipment needs of our clients.


For people living with MND in Tasmania, this will mean that:

  • There will be extra money to help with the purchase of equipment or allow clients to visit private health professionals if necessary
  • The Regional Advisor will have support and assistance with increased access to the health professional network throughout Tasmania
  • Additional methods can be sourced to ‘spread the word’ about MND and the Association
  • Information about what is happening within the Tasmanian health system will be easier to access
  • TML will promote professional development and the upskilling of health professionals with regard to MND 

This additional funding also means that beginning next year, visits to Tasmania will be every six weeks by the Tasmanian Regional Advisor.

The ice bucket challenge is a challenge to raise money for Motor Neurone Disease or ALS, also known as Lou Gehrig's disease.  Participants in the challenge have 24 hours to either donate to fight MND or dump a bucket of ice water over their heads. 

Do you accept the challenge?
 
#icebucketchallenge
 
ICE BUCKET CHALLENGE RULES
  1. Announce you are participating in the Ice Bucket Challenge
  2. You are doing it to support Motor Neurone Disease
  3. Film your “bucketing” (watch for ice lumps) and put it on the internet – on Facebook or YouTube, and promote via social media (#icebucketchallenge).  You can also post your video on our Facebook page
  4. Issue your challenge to other people and tag them in your Facebook page, and announce that you are donating to Motor Neurone Disease Tasmania (if you are)
  5. Remind people on your video that they have 48 hours to accept and complete the challenge or make a donation to Motor Neurone Disease

 

 

Diagnosed with Motor Neurone Disease, June commenced this final challenge - to write her memoirs. Robbed of the ability to speak she started typing a story or two a day. Eighty-six thousand words in all, the keyboard rattled away at the start but finished with single, lonely clicks.

Proceeds from the sale of June's book go to MND research, here's where you can find it:

iBooks via device or iTunes

Amazon via device or Browser

Kobo via device or Browser

You are invited to participate in The Australian Rare Diseases Survey of Adults. This study is being conducted between 21 July and 1 September 2014, by the Office for Population Health Genomics, Department of Health WA in partnership with Rare Voices Australia (RVA), The Genetic and Rare Disease Network (GARDN), Genetic Support Network Victoria (GSNV) and the Association of Genetic Support Australasia (AGSA).

The purpose of this research study is to explore the healthcare experiences of adults living with a rare disease in Australia. This includes your experiences of: diagnosis, access to information, support and treatment; use of health services; patient registries, clinical trials and research.

We invite you to participate in the survey if you are:

  • Aged 18 years or older and living with a rare disease in Australia, or
  • A carer or paid support worker is permitted to complete the survey if the person aged 18 years or older living with a rare disease does not have the intellectual and/or physical capability to complete the survey

The responses you provide will be very helpful for us to obtain a comprehensive picture of the health care experiences of people living with rare diseases in Australia.  It will provide important information that can be used to advocate for rare diseases, plan for rare diseases at a state and national level and to develop evidence based government policy.

To participate in this study, please click on the link below to the online survey.  The survey is anonymous and takes about 20-25 minutes to complete. We ask you to complete the survey by 5pm (AEST) on 1 September 2014.

Survey Link:


www.surveymonkey.com/s/AustralianRDsurvey
 
If you know someone else who might want to participate in the survey, please send to them the link to the online survey. 
 
We apologise for any cross-posting of this information. 
 
Thank you for participating in this study. All responses to the survey will be collated together. A report will be produced of the survey findings.  If you would like a copy of this report when it is published, or have any questions about the survey, please contact Caron Molster from the Office of Population Health Genomics, Department of Health WA on (08) 9222 6871 or This email address is being protected from spambots. You need JavaScript enabled to view it.

Guy Barnett, Liberal Member for Lyons

Motor Neurone Disease Global Day – 21 June 2014

This Saturday 21 June (tomorrow) is Motor Neurone Disease Global Day. As an Ambassador for Motor Neurone Disease Australia, I feel that it is important to raise awareness of this horrible disease and its impact in the community.

Motor neurone disease claims the lives of almost 800 Australians each year, which is more than two Australians every day.  There are more than 20 Tasmanians living with MND and an estimated 1900 in Australia currently. MND progresses at different rates but most people with the disease die within 2 to 3 years from diagnosis.

For each person diagnosed with the disease an estimated 14 members of their family and friends will live with the impact forever. MND touches the lives of so many people.  I urge people wishing to assist in fighting this debilitating disease to contact Motor Neurone  Disease Australia on 1800 806 632.

This year we hope to raise over $1,000,000 from throughout Australia.

The original media release can be downloaded here