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News & Events

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...

World Duchenne Awareness Day - 7 September 2018

10 September 2018

World Duchenne Awareness Day is a day to recognise and raise awareness for the 1 in 3500 boys and the rare girls diagnosed.

The date is specifically chosen (7/9) in recognition of the 79 exons that make up the dystrophin gene. Ollie has a point mutation in exon 51.

This year the goal of fundraising is to ensure the standards of care for Duchenne patients and their families around the globe is consistent. This includes creating educational videos.

Adaptive Clothing for People with Disabilities

10 September 2018

Tommy Hilfiger has created a range of adaptive \ modified clothing for people with disabilities. 

To read more:https://www.bustle.com/p/tommy-hilfigers-adaptive-...

The Benefits of Stretching - Duchenne Muscular Dystrophy

30 July 2018

Regular stretching is of enormous benefit for children with Duchenne muscular dystrophy. It is recommended that a stretching routine is put in place as early as possible, and that it is done daily or at least 4 to 6 times a week - particularly of the tendons, the achilles, hamstring and ileo-tibial bands. Stretching can delay contractures. This is when muscles around the joints such as the ankles, knees, hips, elbows, wrists, and fingers shorten and become fixed. 

To read more:https://www.duchenneuk.org/physiotherapy-advice-mu...

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...