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News & Events

Learning and Behaviour in Duchenne Muscular Dystrophy

2 July 2018

Professionals have determined that there are established behavioural and learning risks associated with Duchenne Muscular Dystrophy. 

Language and speech delay, short term and working memory concerns, learning to read and count, making friends and keeping your emotions in check are just part of what makes up the whole Duchenne package.

To read more:https://www.actionduchenne.org/learning-and-behavi...

Special Needs Parents and Isolation

23 May 2018

When our children are diagnosed, we tend to pour ourselves into the diagnosis. We research, talk to experts, doctors, therapists, special education professionals, all in an effort to help our kids have the best life possible.

In all the preparation and planning we do to help our children, we can fail to prepare ourselves for the journey. The whirlwind of emotions such as grief and denial appear and may lead to parents feeling isolated. 

To read more: http://raisingtheextraordinary.com/isolation-speci...

Duchenne Muscular Dystrophy and Accessible Air Travel

23 May 2018

Eventually, Duchenne Muscular Dystrophy patients will require the use of a wheelchair to get around. 

Accessible air travel is essential for wheelchair bound flyers. 

To read more: https://www.findatopdoc.com/Healthy-Living/Why-Acc...

Nutrition and Duchenne Muscular Dystrophy

27 April 2018

When you are diagnosed with Duchenne Muscular Dystrophy, altering your diet can make a big difference to your quality of life. 

It's important to know which foods you should have and which foods you should avoid.

To read more: https://www.findatopdoc.com/Diet-and-Nutrition/Nut..

Parking with an Invisible Disability

5 March 2018

The international symbol for disability printed on every accessible parking space is a little blue stick figure in a wheelchair, meaning that space is reserved for people with disabilities. The only problem is, not everyone with a disability looks like that stick figure.

An invisible disability cannot be easily seen by others. People with invisible disabilities often live with symptoms like pain, fatigue, balance problems, cognitive or mental dysfunction and vision and hearing impairments.

To read more: https://www.bluebadgeinsurance.com.au/people-invis...

Managing the Emotional Struggles that come with Duchenne Muscular Dystrophy

15 February 2018

After receiving a diagnosis of Duchenne Muscular Dystrophy (DMD), the focus tends to be on how to deal with the physical side of things. There might be discussions about accessibility, physical therapy, and other treatment options. 

All of these discussions are great and certainly have an impact on living with the disorder, but there is another part of DMD that needs to be looked at and that is dealing with the many emotions that can sometimes be overwhelming for a youngster.

Frustration, anger, self-pity, anxiety are just a few of the emotions that can run through a young boy’s mind when they are learning to cope with the disease.

Since DMD strikes young kids, particularly boys, it’s critical that caregivers and family members clear a path for emotional health.

To read more: https://www.findatopdoc.com/Parenting/Managing-the...

Duchenne Muscular Dystrophy - Adapting Sports Classes

15 February 2018

Experts all agree on the importance of stretching exercises for DMD patients rather than exercises that involve physical exertion such as weights, pull ups, running or stair climbing.

Stretching the knees, hips, foot and ankle will reduce the chance of muscles weakening.

To read more: https://www.findatopdoc.com/Parenting/Navigating-P...

The Benefits of Music - Duchenne Muscular Dystrophy

30 January 2018

Music can be of great value for children with Duchenne Muscular Dystrophy and has been shown to significantly provide relief from stress and pain and to improve memory, physical balance, and emotional well-being. 

In particular, the development of gross motor skills such as sitting, walking, and running can be aided by moving to the music while developing fine motor skills, such as the movement of individual fingers, which can be aided by playing musical instruments like the piano.

To read more: https://www.findatopdoc.com/Parenting/the-sweet-so...

HopeforOllie Gingerbread Fundraiser 2017 a HUGE success!

16 December 2017

The 4th annual Gingerbread House Fundraiser was yet again another huge success. 

This sell out event, with over 270 people in attendance over the 3 sessions generated a massive $3745 in funds for research into Duchenne Muscular Dystrophy.  It was our biggest and best Fundraiser to date.

A big thank you to Louisa and Kylie for organising and running this event.

All money raised was donated to DMD clinical research at The Children's Hospital at Westmead.

If you would like to be kept updated for the 2018 fundraiser, subscribe here.



The Challenges of Daily Life - Duchenne Muscular Dystrophy

2 August 2017

Aside from progressively weakening muscles, Duchenne Muscular Dystrophy (DMD) is also responsible for the stiffening and constriction of tendons, ligaments, and other connective tissues, rendering them inflexible and resulting in limited movements.

Certain activities that require intense motion such as playing sports or simply walking, running, and jogging become extremely difficult, which is why people with muscular dystrophy often find themselves in need of the aid of certain equipment such as strollers, walkers, braces, crutches, and wheelchairs to be capable of moving around.

To read more: https://www.findatopdoc.com/Healthy-Living/Living-...