Duchenne muscular dystrophy - Our Story

This presentation is still true of many boys and youths affected by Duchenne around the world. Through improved treatment, many of our youths and men are living into their 20's and 30's. Parent Projects worldwide have played a large part in improving longevity and quality of life, but more research is needed to test many viable treatments to preserve muscle strength. Parent Project Australia is now known as Duchenne Foundation or TheBlueBall but we'll always be a member of United Parent Projects Muscular Dystrophy.

Category:

Nonprofits & Activism

Tags:

• Parent
• Project
• Duchenne

[rainrtr]

Which MD? There are 50+ I only know about DMD/BMD not any of the other separate MD's. Cardiomyopathy has more genetic similarities to DMD than e.g. SMA, FSHD, etc.

[MrLilfrog]

Our son was diagnosed with DMD at the tender age of 9 months, he is now 16 months and yet to learn how to walk. It really chews you up inside to know that when he does learn this precious gift will be taken away just as quickly.

Yesterday I took him to the doctor for his regular checkup. The worst thing is that you start to feel some "normality" in your life just before one of these visits only to have your world come crashing down around you, ready to be rebuilt for the next visit. God bless

[rainrtr]

I hear you, but maybe not? If steroids are given by 4yrs of age, ambulation can be extended into adolescence in some cases. In the next few years, we will so much more to pin our hopes upon. Take care.

[cooldit1]

We will as a world come together and kill this awful disease. WE WILL. I HAVE FAITH!!! I am still a firm believer in God and feel that gets me through my days w/out issues. DIE! DUCHENNE MUSCULAR DYSTROPHY!! I only say this because i have the disease.

[rainrtr]

It is good to have "fire in the belly". I trust you will raise a lot of awareness to support our scientists more who are coming together to work on a treatment . How could you do that? Are you good at art/computer art maybe and put this slogan somewhere in the frame? Wear it as a t-shirt ? Be interested to see how you use it . Too many of us get asked "how are you?" and without thinking we reply "fine thankyou".. but as they say the squeaky wheel gets more oil".

[dilan678]

i have a duchenne too but now at the age of 16 I can still walk and manage myself to do some stuff around the house also in school and I dont have any learning disabilities,breathing difficulties,calf muscles enlargement,spinal cord malformation, I FEEL THAT IM LUCKY COZ I DONT HAVE THE ALL KINDS OF SYMPTOMS! I WISH THAT I COULD HAVE A LONG LIFE WITH MY WIFE AND KIDS IN THE FUTURE! believe it or not I play volleyball or do some hiphop moves but of course its limited! I HOPE THERES ALREADY A CURE

[rainrtr]

You have obviously done all the right things available to you. We need to push such treatment and determination for all boys and youths around the world. Can you post a video reply of your hiphop or volleyball? I've networked with some dudes who have wives and children. You sound like an interesting guy so I reckon Mrs Right should find you one day as you keep having fun with your wider peer group. I hope exon-skipping will provide increased strength, that's why we have to raise awareness.

[wwwLivingWithMDcom]

Hello i have just launched my Muscular Dystrophy forums/site, i intend for the community to grow at a good rate once i get the word out.

I am going around on youtube and attempting to contact everyone with md i can find to try and grow the community, i know i have been looking for decent forums for years.

Matt

[rocket8r8]

1.-copy and paste

2.-paste it in 2 different videos

3.. hold breath for 10 secs

4.- look at your hand

[jerzeytpke]

Im crying so hard. MY sons best friend (since he was 7) has this form of MD. He never rode a bike he never walkd or ran. He will be 17 soon and its just getting worst. God help us find a cure.

[MrNikolaos09]

without the pills you can die i know because i have it myself

[cooldit1]

@dilan678 are you sure you don't have Becker?