Thursday 24 March 2011

PPMD - Duchenne app now downloading

Parent Project Muscular Dystrophy: Home: "Download PPMD’s New Duchenne App
PPMD is excited to announce the release of our new, free mobile applications designed specifically for the iPhone, iPad, and Androids. PPMD's new app will put emergency care information, critical research news, and advocacy alerts at your fingertips, instantaneously"

Results of Prosensa’s Extended Phase I/II Exon-skipping Trial in Duchenne Muscular Dystrophy Published in the New England Journal of Medicine - Prosensa

Results of Prosensa’s Extended Phase I/II Exon-skipping Trial in Duchenne Muscular Dystrophy Published in the New England Journal of Medicine - Prosensa: "Prosensa,, announces the publication of results from a phase I/II and 12-week extension study of its lead product, PRO051 (GSK2402968) for the treatment of Duchenne Muscular Dystrophy (DMD) in the New England Journal of Medicine (NEJM)[1]."

Wednesday 23 March 2011

Parent Project Muscular Dystrophy: Mobile App

Parent Project Muscular Dystrophy: Mobile App: "The next time you are meeting with your doctor and want to access information from PPMD's vast research or care archive, you can. The next time you have to take your child to the emergency room and are unsure what safety measures must be taken into consideration, the PPMD app is there. The next time you are in an IEP meeting and need to make sure you went through your checklist of discussion items, your go-to resource is available"

Tuesday 22 March 2011

Transparent fish to make human biology clearer

Transparent fish to make human biology clearer: "Zebrafish are genetically similar to humans and are good models for human biology and disease. Now, researchers at Children's Hospital Boston have created a zebrafish that is transparent throughout its life. The new fish allows scientists to directly view its internal organs, and observe processes like tumor metastasis and blood production after bone-marrow transplant in a living organism."

New insight into Duchenne muscular dystrophy

New insight into Duchenne muscular dystrophy: "Armed with a zebrafish model of Duchenne muscular dystrophy (DMD) and a library of 1,200 chemicals already approved for human use, researchers at Children's Hospital Boston have identified a compound that reverses the loss of muscle structure and function associated with DMD, seemingly by compensating for the loss of a critical protein."

Thursday 17 March 2011

2012 Walt Disney World Marathon Weekend Registration is Open!

Parent Project Muscular Dystrophy:: "2012 Walt Disney World Marathon Weekend Registration is Open!
Register today for a magical family weekend."

GSK Now Recruiting for Exon 51 Clinical Trial in Non-Ambulatory Boys

Parent Project Muscular Dystrophy: Home: "GSK Now Recruiting for Exon 51 Clinical Trial in Non-Ambulatory Boys
This study will assess the pharmacokinetics, safety, and tolerability of GSK2402968 after a single administration, at escalating dose levels, in non-ambulatory boys with Duchenne who have a dystrophin gene mutation amenable to an exon 51 skip."

Tuesday 8 March 2011

1 wee boy - 3 fractures

We were at a swimming party on Saturday and Logan slipped whilst diving into the water. His foot hurt a bit but he carried on.

It swelled up overnight and we got it checked at hospital on Sunday - no real pain so just keep an eye on it.

It swelled up even more on Sunday night so Monday Donna took him for an x-ray - 3 fractures on his instep!

He now has his leg in plaster (looks a bit like licorice) but even that could not stop him smiling!

Love you Logan

AMT Receives Grant From Dutch Parents Organization for Duchenne Muscular Dystrophy Gene Therapy -- AMSTERDAM, March 7, 2011 /PRNewswire-FirstCall/ --

AMT Receives Grant From Dutch Parents Organization for Duchenne Muscular Dystrophy Gene Therapy -- AMSTERDAM, March 7, 2011 /PRNewswire-FirstCall/ --: "AMT Receives Grant From Dutch Parents Organization for Duchenne Muscular Dystrophy Gene Therapy"

Thursday 3 March 2011

Funds for Action Duchenne as Xbox fans blast aliens with new game - View News Article - Action Duchenne - Fighting for a cure for muscular dystrophy

Funds for Action Duchenne as Xbox fans blast aliens with new game - View News Article - Action Duchenne - Fighting for a cure for muscular dystrophy: "Proceeds from a newly released game, Alien Super Mega Blaster for Microsoft Xbox 360 are being donated to the charity Action Duchenne by developer Jon Hearn. The classic space invaders game with a twist was developed by Jon in his spare time."

Tuesday 1 March 2011

CARE-NMD launches new project website - visit now - View News Article - Action Duchenne - Fighting for a cure for muscular dystrophy

CARE-NMD launches new project website - visit now - View News Article - Action Duchenne - Fighting for a cure for muscular dystrophy: "CARE-NMD launches new project website
Online resources made available to patients, families and clinicians across Europe on standards of care for DMD
A newly revised website has been launched as part of CARE-NMD, (www.care-nmd.eu) the three year project to implement best-practice standards of care for Duchenne muscular dystrophy across Europe."

Love Runs raise over £40k to help find a cure! - View News Article - Action Duchenne - Fighting for a cure for muscular dystrophy

Love Runs raise over £40k to help find a cure! - View News Article - Action Duchenne - Fighting for a cure for muscular dystrophy: "The results have been announced, and we are eagerly gathering in the funds raised, and it is looking good! At the moment from entries and sponsorship it is looking like we will have raised over £40k to help find a cure for Duchenne."

Videos: Patients with Rare Diseases and Conditions > Duchenne muscular dystrophy: Charlie's Story

Videos: Patients with Rare Diseases and Conditions > Duchenne muscular dystrophy: Charlie's Story: "Chuck and his son Charlie visited OOPD and told their story of living with Duchenne muscular dystrophy (DMD). Charlie was diagnosed when he was 18 months old, and now at 11 years old describes his life challenges and goals."

Google Reader (53)

Google Reader (53): "Chuck and his son Charlie visited OOPD and told their story of living with Duchenne muscular dystrophy (DMD). Charlie was diagnosed when he was 18 months old, and now at 11 years old describes his life challenges and goals."