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Online Communities

National Digital Resource POSITIVE OUTCOMES

Update AT THE SMA

Muscular Dystrophy Foundation Ltd (MDF) has PARLIAMENTARY
partnered with The Brand Leadership Company,
Meerkats, to develop the Neuromuscular Digital SUMMIT
Resource - an online, integrated and accessible
resource to strengthen the capacity and skills
of Australians living with muscular dystrophy It was really empowering to see so many adults
and neuromuscular conditions, their families and living with Spinal Muscular Atrophy (SMA), along
carers. with parents of children with SMA, come together
to raise awareness of the impact of the condition
The Resource, which has been funded through a and the importance of access to treatment at
National Disability insurance Agency information, the SMA Parliamentary Summit in Canberra, on
linkages and Capacity Building (ilC) grant, will 18 September 2019.
essentially be a ‘one-stop-shop’ for Australians
living with a neuromuscular condition, their families it was also great to shake the hand of the Prime
and carers to access the latest in medical research, Minister, Scott Morrison, as well as Minister for health,
condition information, support services as well as greg hunt, and actually hear our names mentioned
practical peer-based stories and life tips. in his speech! We heard from Dr Michelle Farrar, as
well as everyone who shared their own SMA stories,
MDNSW is working closely with MDF and other which just made the day more powerful.
associations on the development of the Resource,
including the latest stage of branding and design. it was announced that newborn screening will be
The Resource is due to be launched in March 2020. promoted with dedicated funding to educate gPs
and healthcare professionals. it was also really
encouraging to hear that once the Pharmaceutical
Benefits Advisory Committee (PBAC) comes back
with a (hopefully positive)
recommendation, that
PoliCY Spinraza will be fast-
tracked to be available
for adults on the PBS.
To be treated with this
UPDATE new treatment would
mean so much to myself
and others in our SMA
community.
Seeking your input To end the day, we
chatted with others
MDNSW’s policies and systems have been developed living with SMA who’d
and reviewed by staff and the Board of MDNSW, but we travelled to Canberra
would also like your input. As a client or family member from all parts of the
country. People from
of a client, your feedback is very important. If you would Melbourne don’t have a
like to read and make suggestions about our policies, let peer support community
us know! Our key Policies are available on our website meet up, so they were
but we can send any of them to you. For a list, contact keen to hear about
us. MDNSW’s SMArties Peer
Connect program.
Also, every year at the Neuromuscular information and
Research Day event we will have a few policies on hand for lastly, a special thanks
people to take home, read and to Joan and Maralyn for
make suggestions to improve driving me to Canberra
them. if you have questions to attend this important
day of advocacy!
about any of our policies or
would like to see any of them, Julie Duong, Top: Julie meets the PM
please contact us. MDNSW Member Bottom: At Parliament House

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