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News & Events

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...

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...