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News & Events

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-...



Clinical Trial Shows Ataluren Can Slow Down the Progression of Duchenne Muscular Dystrophy

20 July 2017

The results of an international clinical trial show that a drug therapy for a severe type of muscular dystrophy holds promise for a subgroup of patients with Duchenne muscular dystrophy. The trial was led in part by Craig McDonald, a UC Davis School of medicine expert.

“What’s very encouraging about these findings is that a treatment using ataluren for certain individuals with Duchenne muscular dystrophy may prompt a slowing or stabilizing of the disease progression and motor function that can be very meaningful to patients and provide them with invaluable, quality-of-life benefits,” McDonald said.

To read more: http://www.davisenterprise.com/local-news/clinical...



Muscular Dystrophy - The Three Best Treatment Methods

13 July 2017

There is no definite cure for Muscular Dystrophy but there are ways to manage the condition such as physical therapy, doctor prescribed medication and surgery.

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



Muscular Dystrophy - Telling a Child the Truth about Their Condition

13 July 2017

Muscular Dystrophy (MD) is a category of muscle diseases that cause progressive weakness and loss of muscle mass. 

MD is either inherited or can be due to a genetic mutation. 

Kids with MD usually follow a normal pattern of growth development in the first few years of their lives, but the signs and symptoms of MD gradually take place as time goes by.

Being honest with your child is the best way for them to understand why they are experiencing such things.

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



How to Explain Muscular Dystrophy to Family and Friends

9 July 2017

Unless personally affected by muscular dystrophy, no one can fully come close to understanding it or understanding what it is like to deal with. Explaining muscular dystrophy to your friends and family will take time, and you might need to remind some people of what you’re going through.

Explaining muscular dystrophy to your friends and family will play a vital role in your acceptance of your current situation.

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



Local Business BarItalia Leichhardt Raises funds for HopeforOllie

24 December 2016

Local business support means so much! BarItalia in Leichhardt has been a regular HopeforOllie supporter since June 2016. 

Here is a video link of the Christmas Hamper kindly created by the owners, Con and Sarina, to raise funds for DMD clinical research https://www.facebook.com/BarItaliaLeichhardt/video...

Thank you so much x