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News & Events

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

Muscular Dystrophy and Understanding How Muscles Work

16 March 2019

The body is made up three different types of muscles - smooth muscle, cardiac muscle and skeletal muscle.

To read more:https://www.findatopdoc.com/Healthy-Living/Muscular-Dystrophy-A-New-Understanding-of-How-Muscles-Work?fbpage=muscular_dystrophy&fbclid=IwAR0R2oe0Yhr0SAnsveh1tgFfIxG8vtlIs54DuriBAdsQcgSr-73XLf5Kr4o

Muscular Dystrophy and Exercise

1 March 2019

There are different types of muscular dystrophy and the severity of the condition can vary greatly from one patient to another.

To read more:https://musculardystrophynews.com/forums/forums/topic/which-exercises-are-good-for-slow-progressing-muscular-dystrophy/?fbclid=IwAR2OlPV14-SyWIvHwAVZ0cVRgoNBTR5nUooBS8wuFNk7dZ53hxVZAzkdKxA

Duchenne Muscular Dystrophy and Defying the Odds

7 February 2019

Duchenne is different for each child. There are 79 exons in the dystrophin gene which means the mutation for your child may not be the same as another child. Walking independently, the use of a wheelchair, the use of ventilators and cough assist equipment will vary as needs change. Life expectancy and quality of life is also different.

To read more:https://musculardystrophynews.com/2019/02/08/defyi...

HopeforOllie Gingerbread Fundraiser 2018 a HUGE success!

22 December 2018

Did you hear the exciting news? The annual Hope for OllieGingerbread Fundraiser held on Sunday 9 December 2018 raised a total of $6,450 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 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.

HopeforOllie Preferred Napery Supplier to Hartsyard

1 October 2018

Next time you dine at Hartsyard, take a look at the napery! 

HopeforOllie was asked to supply high quality, durable and funky napkins to the award winning restaurant in November 2017 and has since become the preferred supplier to the establishment.

"When you are asked by Hartsyard to make the napery for their restaurant, you happily oblige!" stated Patricia McPhail, Founder of HopeforOllie.

The owners both agreed, "these are the funnest napkins we've ever had!"

To read more:https://truthloveandcleancutlery.com/profiles/aust...

Vamorolone - A Promising New Steroid to Treat Duchenne Muscular Dystrophy

29 September 2018

A head-to-head trial comparing the decades-old steroid, prednisone, and a promising new steroid, vamorolone, finds both act on the same key set of genetic pathways involved in controlling inflammation, indicates a new study led by Children's National Health System researchers. However, the study suggests the new investigational steroid doesn't activate several additional pathways involved in prednisone's bevy of undesirable side effects.

Vamorolone, which was developed at Children's National, has the potential to be a game-changer for patients who need to use prednisone long-term

To read more:https://www.eurekalert.org/pub_releases/2018-09/cn...

Duchenne Muscular Dystrophy and OCD

29 September 2018

Researchers have found that compared to the general population there is a higher than average prevalence of obsessive-compulsive disorder (OCD) in those with Duchenne Muscular Dystrophy (DMD).

To read more:https://psychcentral.com/blog/ocd-and-muscular-dys...