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Dear Community Member,
I think the last time I was writing to you all as a group, we were sharing our tips and offering support to get through tropical cycline Alfred. Here in Underwood, other than a messy carpark covered in leaves, the office and client centre came through unscathed. But a number of our team, including myself, faced flooding and extended power outages. I was so proud of how the team worked together, to reach out to the most vulnerable members of community, to check in and ensure they were safe and sound. And now our thoughts turn to Queenslanders in the outback, facing such terrible flooding. With so many affected, I do you hope you and your loved ones come through it well.
You'll see in the stories below, that the team have been busy hosting events and other opportunities to connect with others living with MD and other NMDs.
Thanks to new funding from the NDIS Peer Support and Capacity Building Grant, James Frizelle Charitable Foundation, the Broncos Charitable Fund and others, we're pleased to be able to share news of our expanding charitable programs.
Enjoy the read and keep well,
Penny Deavin
CEO | Muscular Dystrophy Queensland
Red Bow Month Celebrations!
March is MDQ's key awareness raising month as part of Red Bow Month. Since 1994, on the first Friday of March, All Hallows Year 11 students have converged on Brisbane's CBD to raise funds and awareness. This year for the first time ever, the weather prevented our planned collection. Once Cyclone Alfred had moved on though, the girls went our in force and raised a tremendous $17,204 to support families living with muscular dystrophy!
MDQ's Fundraising Team: Vicki, Sarah & Karen
All Hallows School students getting into the Red Bow spirit!
Brisbane City Council lit up the Story Bridge and other city icons including Government House, where our patron Her Excellency the Honourable Dr Jeannette Young AC PSM, Governor of Queensland, hosted a wonderful morning tea to support our cause. This event was well attended by people from all aspects of our community. Other supporters and community members also got involved in hosting their own 'Tea4MD' throughout the month.
Find out more about hosting your own Tea4MD at redbow.org.au
Upcoming events this quarter
School Kids Holiday Fun: School holiday fun with a tropical theme at Toombul Hall 10am - 2pm 10th April. For all school-aged kids and thier siblings and parents. Games, crafts, mentoring, Social Worker led parent program, free pizza lunch.
Please RSVP to info@mdqld.org.au if you would like to come along.
Virtual Coffee and Chat Parents/Carers Group: a group specifically for parents and carers of people with neuromuscular conditions. Meetings are via Teams every 2nd month on the 2nd Wednesday. Please email penelopeh@mdqld.org.au for a Teams link.
9 April | 11 June | 13 August | 8 October
Virtual Coffee and Chat: held on the last Wednesday of each month. This is an online group, hosted by our Community Liaison Group, that meets on Teams and is open to anyone in the neuromuscular community. A space to discuss life, challenges, ideas and celebrate wins with others who understand. Please email CLGchair@mdqld.org.au for a Teams link.
30 Apr | 28 May | 25 Jun | 30 Jul | 27 Aug | 24 Sep | 29 Oct | 26 Nov
In-person Coffee and Chat: If you would rather meet up in person for a coffee and chat, join Noni from MDQ's Community Liaison Group, 7 April at "The Bush Pantry" at Horizons, 1-15A Runnymede Rd, Capalaba. Coffee, tea, cakes, etc available at own cost. Open to anyone with a neuromuscular condition. Bring a friend, family member or carer if you need and make some new connections within the community.
Please RSVP to info@mdqld.org.au if you would like to come along.
FSHD Coffee and Chat: Our first FSHD Coffee and Chat is a collaboration with FSHD Global and is for anyone living with FSHD who would like to connect with other people with the same condition. Please join us 10:30am at The Lions Richlands. Bring a friend, family member or carer if you need and make some new connections within the FSHD community.
Please RSVP to info@mdqld.org.au if you would like to come along.
Medical Research Seminar: Join us for expert insights on neuromuscular research, including new treatments, an upcoming Myotonic clinical trial, and a Q&A with MDQ’s Allied Health Panel.
10:00am to 1:30pm, Tuesday 27th May at the Logan Entertainment Centre
Morning tea and lunch provided. All welcome, with in-person and online access available.
RSVP to info@mdqld.org.au or call 3243 9700
Family Games: Board games fun for the whole family at Bracken Ridge Community Hall 17th May at 1pm - Bring a plate! Please RSVP to info@mdqld.org.au if you would like to come along.
Gold Coast Community Dinner: Join us for dinner at Southport Sharks' Frenzy Restaurant on 14th June. More details to come soon!
We are very happy to announce that we are organising our first Mothers' Retreat thanks to a grant from the wonderful people from the James Frizelle Charitable Foundation!
Mums are often the unsung heroes of our community. We know that it is not easy caring for kids (even adult ones) who have a neuromuscular condition. It is also hard being a mum when you have a neuromuscular condition. We think that you deserve some special care and pampering so we are planning a weekend of special treats at the Gold Coast, including a couple of nights away from it all at a nice hotel.
More information will be coming soon, but please register your interest now (or nominate a mum your know) if you might like to be involved.
Welcome our new Social Worker
We are excited to let you know we have appointed a part time Social Worker to join our Allied Health team!
Vicki Carrick is an experienced social worker, who has current registration with the Australian Association of Social Workers. She holds a Master of Social Work from Griffith University, along with a Bachelor of Arts (Psychology) and Master in Social Administration (Community Development).
Vicki will work Monday, Tuesday and Wednesday mornings, providing emotional support and counselling to our clients and their families along with facilitating peer connection and online groups.
How can MDQ Social Work support you?
- Up to 4 free counselling sessions with a qualified social worker
- Offered to individuals, parents, and caregivers living with the daily struggles of life with MD
- Focus can be on individual or family mental wellbeing
- Confidential space to talk about:
- daily stressors
- relationships
- health challenges
- improving coping skills
- life changes
- grief and loss.
- Phone, virtual or in-person sessions available
Please contact MDQ on 3243 9700 or email info@mdqld.org.au if you would like to book an appointment with Vicki. Thanks to funding from the new NDIS Peer Support and Capacity Building Grant we can provide this service to our community at no cost to you - no NDIS plan needed!
MASS Expansion Project
Queensland Health is launching an exciting pilot expansion of the Medical Aids Subsidy Scheme (MASS) to improve access to essential assistive technology (AT) for some of the state’s most vulnerable residents. This innovative project will run until June 2025, aiming to bridge service gaps, reduce waiting times, and improve the quality of life for those in need.
The pilot expansion will provide enhanced support to four key consumer groups:
- Patients Needing Assistive Technology for Safe Discharge Home
- Providing timely AT to a wider group of hospital inpatients to support a safe and efficient transition from hospital to home.
- Disability and Refugee Health Communities
- Expanding eligibility to include people with disabilities and refugees who currently face barriers in accessing Assistive Technology.
- Palliative Care Equipment Users
- Supplying essential Assistive Technology to individuals receiving end-of-life care, expanding the current MASS eligibility, ensuring comfort and dignity.
- Spinal Cord Injury Patients Outside the PAH Spinal Injury Unit
- Addressing the AT needs of Spinal Cord Injury patients not covered by the PAH Spinal Injury Unit.
These initiatives aim to reduce waiting times, expand eligibility, provide equitable access and enhance access for rural and remote communities. By addressing these challenges, MASS will empower individuals to live more independently, reduce hospital length of stays, and improve overall well-being.
Applications may be accepted up to close of business Friday 6th June 2025 (or sooner if funding limit is reached/or the item cannot be delivered by June 27, 2025).
Broncos v Tigers 50-50 Raffle to support MDQ!
Volunteers for Muscular Dystrophy Queensland will invade Suncorp Stadium on Saturday night to sell 50-50 raffle tickets in support of MDQ. Half the money raised will go to the winner of the lucky ticket and the remaining half goes to MDQ to support our community. The Bronco's have even guaranteed a minimum cash prize of $20,000 and you can also be in with a chance to win - even if you aren't at the game!
ANN Congress 2025
The Australian Neuromuscular Network Congress was held at the Sunshine Coast 26-28 March. MDQ welcomed this opportunity for professional development, with our Allied Health team attending Wednesday and Thursday sessions and our Support Coordination team attending Friday's session which was dedicated to families, patients and advocacy groups.
With so much new research into genetic diseases happening around the world, it was a wonderful opportunity to hear from International and Australian researchers and health professionals. We will be collating information from the event and will share relevant news and information at our upcoming free medical and research seminar 27th May.
Upcoming Awareness Days
Uniting the global community of individuals affected by Ullrich Muscular Dystrophy, Bethlem Congenital Myopathy, Myosclerosis,and intermediate forms of COL6-related myopathies. It aims to bring together patients, their families, healthcare providers, researchers, andsupporters from around the world to foster collaboration, raise awareness, and drive progress in the fight against these rare diseases.
World FSHD Day is held every year on June 20th and aims to raise public awareness for FSHD. Few members of the public have never heard of Facioscapulohumeral Muscular Dystrophy, and many affected individuals don’t know that they have the condition.
FSHD one of the most common forms of muscular dystrophy affecting over 1 million people worldwide.
This international day aims to bring awareness of this debilitating disease to the general public and decrease the misdiagnoses within the medical industry.
Julian's Key Health Passport
Julian’s Key Health Passport (Julian’s Key) is a communication tool designed to help healthcare staff provide you with the best care by sharing important and useful information about patients, as chosen by patients.
It includes important details, such as how a patient communicates their support and care needs. This allows healthcare staff to quickly access the information they need to provide them with the best care. It is for everyone, but especially those who need extra support to communicate or who have complicated care needs.
Julian’s Key Health Passport is available in both printed and digital formats. Visit Queensland Health website for more information and the links to get your printed copy mailed to you for free or download a digital version today.
Ipswich Community Lunch
Thanks to everyone who came along to our first Ipswich Community Lunch! We hope to make this an annual occasion but would also love the opportunity to facilitate more regular catch ups in Ipswich and across Queensland. Get in touch if you would be interested in starting regular catch ups in your area.
Clinical Research Study Opportunity for DM1
Are you or someone you know living with type 1 myotonic dystrophy (DM1)? A new clinical research study is exploring a potential treatment, and you may be eligible to participate.
- Aged 18 to 65
- Diagnosed with DM1
- Can walk a short distance independently
For more info, contact: Sunshine Coast University Hospital – Clinical Trials Unit on (07) 5202 7623
Rare Voices Parliamentary Friends
Our CEO, Penny joined representatives from other rare disease organisations at the Rare Voices Parliamentary Friends event in Canberra, hosted by Parliamentary Friends co-chairs Dr. Mike Freelander and Dr. Monique Ryan. It was a worthwhile opportunity to connect with people from like-minded organisations across the country and raise the profile of neuromuscular diseases and calling for the government to continue the implementation of the National Strategic Action Plan for Rare Diseases.
The Community Liaison Group (CLG)
Our Community Liaison Group is a group of dedicated community members who inform the MDQ Board about issues that are important to the neuromuscular community. They have been instrumental in developing some of our community events - including our new Virtual Coffee and Chat Parents Group and the Family Games Day at Bracken Ridge.
At our last meeting we welcomed a new CLG member, Nina Crawford.
Hi everyone. I’m Nina Crawford & I’ve joined the CLG this year as I want to help run events & create opportunities for our wonderful community.
I live with my partner James who is a school teacher. In my previous life I was a primary teacher. However I now do volunteer work & am a stay at home dog mum to our gorgeous 18 month old Labrador, Willow.
My muscle disease doesn’t have a name yet as genetic testing is still happening which is a bit exciting & daunting. A slow recovery from a broken femur in 2019 has meant that I now rely on my power assist wheelchair full time. I have very recently taken ownership of my modified car which has made my days dramatically easier as I don’t have to shuffle to the boot to get my chair via a hoist. Now the car has a ramp & a 6-way turn seat so I can drive.
If I can be of any assistance please reach out as I want to help where I can.
All the best,
Nina (& Willow)
If you would like to contact the CLG please email CLGchair@mdqld.org.au
We are updating our website
We want to update our website with information that is useful and relevant to our community and we want to hear from you!
Please tell us what topics we should cover and what information you wish you could find on our website.
News from Muscular Dystrophy Foundation Australia
MDFA has appointed a new intern - Jack Rowland.
Jack is studying Master of Public Health at Macquarie Uni. His interests in public health intersect with the environment and with Muscular Dystrophy. Jack was diagnosed with Becker MD aged 12 and has been working hard to keep healthy, informed and change the world.
He recently joined MDFA Advocacy Lead, Rachel Spencer at the Australian Human Rights Commission, Equality to Work event. Jack got to meet many people including our Disability Discrimination Commissioner, Rosemary Kayess – who is also the Vice-Chair of the UN’s Committee on the Rights of Persons with Disabilities.
To learn a little more about Jack,you can read his open letter on climate change here.
