Duchenne Muscular Dystrophy is 100% fatal. There is no cure. Children are losing the ability to walk, eat, draw, play, hug and breathe every day.
DMD is the most common fatal genetic disorder of childhood, but despite that it is not well known and so charities for research into Duchenne dare largely neglected when it comes to both awareness and donations.
Please sign this vital petition for sufferers of Duchenne, thank you!
www.change.org/p/uk-government-to-ensure-everyone-living-with-duchenne-and-becker-muscular-dystrophy-has-access-to-comprehensive-multidisciplinary-specialist-teams
This playlist has some wonderful videos about DMD:
https://www.youtube.com/watch?v=v6evNhpMIEQ&list=PLIVnkXmUlgpTdTQP2c1EcXgDNYDWPjwcJ&index=1
The 10th video is 32 seconds long for those who are interested but would rather not watch the longer 3-5 minute videos, but I do like the second one (I guess because I'm a big sister too! :D)
Really great article by a father whose two sons have the disease:
http://www.theguardian.com/lifeandstyle/2014/aug/16/our-beautiful-sons-could-die-before-us
For more information and a couple more petitions about DMD and disability, please see:
http://cureduchenne.tumblr.com
If you would like to donate, Duchenne Now are a zero cost charity, so 100% of your donation goes straight to fund research for a treatment or cure!
www.duchennenow.org
Though I would advise donating here, as JustGiving take a cut of every donation:
https://mydonate.bt.com/charities/duchennenow
Aggiorna #111 anni fa
Firstly I wanted to thank you all for signing my petition!
Secondly, I wanted to ask whether you would be so kind as to sign this petition about a potential treatment for DMD:
https://petitions.whitehouse.gov/petition/urge-fda-say-yes-accelerated-approval-safe-effective-therapies-children-duchenne/qtRww0rN
It needs 100,000 signers before 29th of this month, so any help would be so, so appreciated!
For more info, please see:
www.care2.com/news/member/950838295/3748029
Thank you for caring!
