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News & Events

2020 World Duchenne Awareness Day Theme Announced

6 June 2020

World Duchenne Awareness Day is held each year on the 7th of September (7/9) to represent the 79 exons in the dystrophin gene.

This year the theme is Duchenne and The Brain.  The impact of Duchenne is physical most obvious, however, learning and behavioural difficulties such as ADD, ADHD, OCD, ODD and autism can also present.

To learn more: https://www.worldduchenneday.org/2020-duchenne-and-the-brain/



The Role of Physiotherapy in Duchenne Muscular Dystrophy

22 May 2020

The goal of physiotherapy in Duchenne Muscular Dystrophy is to preserve range of motion (the flexibility of a joint), strength, and function.

Physical therapists play an important role in:

  • Minimising contractures by introducing daily regular stretching
  • Maintaining function and adapting to any loss of function
  • Monitoring function over time through standard tests and measures
  • Assessing for and managing compromised skin integrity
  • Preventing and managing pain
  • Prescribing exercise and supervising safe physical activity (i.e. low load, low resistance exercise)
  • Recommending mobility devices, adaptive seating, and other equipment
  • Rehabilitation after injury or fracture

Access the Range of Motion Guidelines created by Parent Project Muscular Dystrophy [PPMD&91;:

https://www.parentprojectmd.org/wp-content/uploads/2020/05/Range_of_motion_guidelines_download.pdf



Duchenne Muscular Dystrophy - Using Lego to Build Wheelchair Ramps

25 February 2020

In an effort to undo decades of building design and urban planning that’s made spaces inaccessible to those with mobility challenges, 62-year old Rita Ebel is spending part of her golden years building wheelchair ramps out of colourful lego bricks in an effort to improve the small German town she calls home in several different ways.

To read more: https://www.gizmodo.com.au/2020/02/one-woman-and-thousands-of-lego-bricks-are-building-a-town-much-needed-wheelchair-ramps/



Duchenne Muscular Dystrophy - Walk4Duchenne 2020 Success

24 February 2020

TEAM OLLIE raised approximately $1400 for the annual SaveourSons Wallk4Duchenne Day.

It was truly wonderful to see so many families and friends supporting each other to raise funds and awareness for Duchenne Muscular Dystrophy by walking 7.9km around Gough Whitlam Park.

The clear message from the day was that of hope. Hope that all the research into clinical trials will result in a cure for boys like Ollie. 

A big thank you to those that supported us either by making a donation, coming along to walk with us or sharing our posts on social media.



Duchenne Muscular Dystrophy - Translarna (ATALUREN) Significantly Preserves Ability to Walk for Longer

4 February 2020

Translarna is a protein restoration therapy designed to enable the formation of a functioning protein in patients with genetic disorders caused by a nonsense mutation. 

A nonsense mutation is an alteration in the genetic code that prematurely halts the synthesis of an essential protein. 

Boys with nonsense mutation treated with translarna preserved the ability to walk for years longer than those without the drug.

Currently, translarna is licensed in the European Economic Area for the treatment of nonsense mutation Duchenne muscular dystrophy in ambulatory patients aged two years and older.

To read more: http://ir.ptcbio.com/news-releases/news-release-details/ptc-therapeutics-announces-first-publication-real-world-data



Duchenne Muscular Dystrophy - CRISPR technology

20 January 2020

The Yale School of Medicine is using CRISPR technology to develop the first ever treatment for Duchenne Muscular Dystrophy.

Research in mice has found that CRISPR gene editing may provide a method for lifelong correction of the genetic mutation in DMD and potentially other muscle diseases.

To read more: https://www.wtnh.com/lifestyle/health-news/yale-school-of-medicine-developing-first-ever-treatment-for-duchenne-muscular-dystrophy/?fbclid=IwAR2d0tfT6GRlzR4OaUp7fOCzIZOrl40e0mgQyun0db0oosudh3tO7LPOl9M



HopeforOllie Gingerbread Fundraiser 2019 - A HUGE SUCCESS

20 December 2019

Did you hear the exciting news? The annual Hope for OllieGingerbread Fundraiser held on Sunday 1 December 2019 raised a total of $7,250 for research into Duchenne Muscular Dystrophy for The Children's Hospital at Westmead. Our biggest and best ever result to date!!

It was an absolutely FANTASTIC day with over 300 people in attendance building and decorating their gingerbread houses over the 4 sessions.

The success of this annual event is only possible with YOUR support. Each year we are in awe of the local community and business support.

A HUGE thank you to Louisa and Kylie who take this project on every year with such gusto and dedication.

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Duchenne Muscular Dystrophy - Steroids and Bone Health

28 March 2019

A recently published study has found that boys treated with daily Deflazacort (a corticosteroid) have more fractures than boys treated with other steroid regimes. The study also confirmed previous results that boys treated with daily Deflazacort had the greatest degree of growth stunting and that weight gain was greatest in those treated with daily Prednisolone.

To read more: https://www.actionduchenne.org/News/study-investigates-bone-health-in-duchenne?fbclid=IwAR3cpF_vKhXlqYYXf0cYwTZTFr3nc0etQE0YOFteblSo_Yo8F92oSChk7nA



Duchenne Muscular Dystrophy and Pool Activities

27 March 2019

The pool is great for those with Duchenne Muscular Dystrophy. It provides many benefits including:

  • Buoyancy to reduce the stress on muscles and joints
  • Mild resistance for low grade muscle work
  • Respiratory exercise to maintain or increase capacity and breath control
  • A great place for social interaction with others

To read more: https://www.cureduchenne.org/care/pool-activities/?fbclid=IwAR13Z4g2Pg60HmMmhPbD48nrjIDCeLesKkOhUJwjErkKYRS7lFqYQpQL37g



Duchenne Muscular Dystrophy - Trials, Treatments and Hope

20 March 2019

Scientists are testing nearly two dozen treatments that might stop the disease. But enrolment in the trials is very restricted, and few children qualify.

To read more: https://www.nytimes.com/2019/03/25/health/duchenne-muscular-dystrophy-trials.html?fbclid=IwAR27VvvxzbaiV5J7yidygfznxRvJIBN2xuxf8iHQInQI3lEq94E8OxpQC80