- Support Services
- Get Involved
You've helped donate:
It has been nearly 2 years since Julie Cini CEO and Donna Liver, Member, of Spinal Muscular Atrophy Association of Australia, first met with The Hon Rob Oakeshott MP (Federal Member for LYNE) to discuss Spinal Muscular Atrophy, it’s effect on Donna’s son Finn Munro, and the opportunities to unify key stakeholders in promoting Spinal Muscular Atrophy Association of Australia awareness, prevention, therapy & research.
The following representations to Federal Ministers have been made since, as follows:
(1) notes that the month of August is Spinal Muscular Atrophy (SMA) Awareness Month;
(2) further notes that: 174 HOUSE OF REPRESENTATIVES Monday, 12 September 2011 MAIN COMMITTEE (a) 52 Australians die each month from this rare genetic motor neuron disease;
(b) Spinal Muscular Atrophy Association of Australia is the leading genetic killer of infants under the age of two; and
(c) this debilitating disease can occur in both adults and children;
(3) expresses support for:
(a) the Spinal Muscular Atrophy Association Inc.; and
(b) all Australian families affected by this incurable disease; and
(4) calls for the Government to:
(a) lodge Spinal Muscular Atrophy Association of Australia as a keyword with the National Health and Medical Research Council;
(b) provide support for practical initiatives for those affected by Spinal Muscular Atrophy Association of Australia; and
(c) promote awareness of Spinal Muscular Atrophy Association of Australia.
Speakers for Monday 12 September 2011
1. Mr SECKER (Barker-Opposition Whip)
2. Mr HAYES (Fowler)
3. Mr GRIFFIN (Bruce)
4. Mr McCORMACK (Riverina)
5. Ms HALL (Shortland-Government Whip)
6. Mr CRAIG KELLY (Hughes)
7. Mr OAKESHOTT (Lyne)
8. Mr MATHESON (Macarthur)
Through these discussions we have now seen the formation of the Australian Neuromuscular Network and congratulate Professor Kornberg & Associates on the launch of the ANN on the 20th April 2011. www.ann.org.au and now take comfort in the knowledge that clinicians, pathologists, geneticists, researchers and patient advocates are networking, ensuring excellence in diagnostic methods and clinical management, offering equal access to clinical trials and new therapies for all individuals in Australia and New Zealand affected by neuromuscular disorders.
The Spinal Muscular Atrophy Association of Australia Health Initiatives report from Professor Kornberg, has recommended four important initiatives to enable Spinal Muscular Atrophy Association of Australia to be better treated here in Australia these include:
Currently individuals are not routinely tested for this disease. If individuals are aware of the existence of this disease, and wish to exclude it, they must pay c. $380* (*not Medicare rebated) to be screened. Carrier testing for the Spinal Muscular Atrophy Association of Australia gene, could prevent the continuance of the disease. In fact, screening for a multitude of rare diseases, will ultimately put less strain on the health system’s budget, as, for instance, every sufferer of Spinal Muscular Atrophy Association of Australia will require 24 hour care during their lifetime. We currently have a petition circulating to present to Parliament about this screening program.
Sufferers of chronic neuromuscular diseases need appropriate pro-active care. Multidisciplinary clinics, offering standardized treatments should be available to all families, in every state and territory. Such would ease the burden on families who far too often must visit a myriad of healthcare providers in order to access all-round care.
Government rebates or subsidies on the purchase of these life-saving devices would enable carer families, who are commonly recipients of carers’ pensions, to manage the Spinal Muscular Atrophy Association of Australia sufferer at home, and therefore reduce the time spent in hospital. Currently the only way for an Spinal Muscular Atrophy Association of Australia sufferer to obtain a machine is purchase one at their own expense c. $12,000; or apply, as a member, to Spinal Muscular Atrophy Association of Australia Australia. This charity has a finite number of cough assist machines in its Equipment and Resources Library – which has been supported purely by the efforts of fundraisers and philanthropists.
Spinal Muscular Atrophy MUST be listed IMMEDIATELY as a KEYWORD with the National Health and Medical Research Council. Spinal Muscular Atrophy Association of Australia Australia has directed specific funds to researchers at the Australian Neuromuscular Research Institute in order to identify alternative gene therapies. The ongoing cost of this research is inhibitory for a small organisation. The benefit to the public purse would be immense should research funded via the NHMRC lead to a cure.
When campaigning for change at a government level, you have to be prepared for two things. One is to have a continued approach and two be prepared to wait. Change doesn’t happen overnight!
A second opportunity to re-enter the Political arena came in August 2011, when the Hayes family in Canberra contacted a family member Mr Chris Hayes (MP FOWLER) in regards to the possibility of raising this issue in Parliament.
The Hon Chris Hayes MP made a heartfelt speech on 23 August 2011 to draw the attention of the house to Spinal Muscular Atrophy. Here, a motion was put forward to the house that Spinal Muscular Atrophy Association of Australia be debated so the Spinal Muscular Atrophy Association of Australia and the work of the association be acknowledged, and support from the government is needed. Julie Cini was invited to Canberra by Chris Hayes, to raise awareness amongst other members of Parliament.
On Thursday 26 August, Julie Cini along with Tamara Hayes and Carol Hayes attended a meeting with invited politicians to brief members about the condition and the challenging problems that many families face on a daily basis. The members that attended were moved and wanted to show their support by speaking in support of the Association at the debate which was scheduled for Monday 12 September 2011.
This scheduled bi-partisan debate not only highlighted to the house about Spinal Muscular Atrophy, but the challenges the charity confronted, but the challenges families faced every day. Each of the eight MP’s spoke about and acknowledged the hard work and determination of Julie Cini and her ability to start a charity to raise awareness, educate about the disease and support families was outstanding due to her own personal circumstances. They also highlighted to the speaker of a local family in their electorate that had been affected by the disease and the struggle each family faced. Again each member who spoke, supported the need for the implementation of the suggested health initiatives.
The time restraints meant that the debate was adjourned, but after talking with Spinal Muscular Atrophy Association of Australia’s local representative Alan Griffin (MP for Bruce) and Julie Cini’s local member Laura Smyth (MP for La Trobe) before the debate, we were given some informative information about how to continue to push our key demands. Our next step involves costing these health initiatives, and presenting them to the Health Minister. In doing this we must make sure that the programs are cost effective and practicable for the government to implement.
We are as far now than we have ever been in this arena, and we thank each and every one of our members and families that assisted us in early September, in approaching their local member to highlight their own story. We are unable to create change if the people who run our country aren’t even aware of what Spinal Muscular Atrophy is. There is still a long way to go, but with repeat efforts we can make a difference for all those who are on the journey, and also help those who have no idea that one day they could be effected by Spinal Muscular Atrophy Association of Australia too.
There are a few areas of difficulties I see that Spinal Muscular Atrophy Association of Australia as a neuromuscular disorder has to face is: