NIH awards three grants to explore novel treatment strategies for muscular dystrophy

NIH awards three grants to explore novel treatment strategies for muscular dystrophy: "Three grants totaling more than $4.5 million, from agencies of the National Institutes of Health, will be used to explore novel treatment strategies for muscular dystrophy.

The grants were awarded by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institute of Neurological Disorders and Stroke (NINDS) and Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) for year one of five-year cooperative agreements."

SOBHD Charity Concert

The Scottish Official Board of Highland Dancing presents Assemble and Leap: Celebrating 60 years of the Scottish Official Board of Highland Dancing, in aid of Action Duchenne and the MS Society Scotland.

Join a stunning cast of regional, national and international champions, including multiple Scottish, British, Commonwealth and World Champions for this one off spectacular that will showcase Highland Dancing at its very best!

Featuring new and diverse choreography by some of Scotland's most successful highland dance teachers as well as exciting musical performances from world class pipe bands The House of Edgar Shotts and Dykehead and Scottish Power, this is a truly extraordinary event that you don't want to miss!

Tickets are priced at £12.50 and are available from Rachel McLagan and Gemma Baillie, or at www.ticketmaster.co.uk.  All proceeds will be divided equally between Action Duchenne and the MS Society Scotland.

Brown grants Tivorsan exclusive license for potential muscular dystrophy treatment

Brown grants Tivorsan exclusive license for potential muscular dystrophy treatment: "Development of a potential treatment for the most common form of muscular dystrophy is moving into a new phase at Brown University. Brown has granted an exclusive license for the intellectual property to Tivorsan Pharmaceuticals, a startup firm that will strive to see it through human trials.

Officials from Tivorsan and Brown will meet on campus today (Monday, Sept. 20, 2010) to mark the start of this next phase of the potential treatment's development."

Harbor Springs guys Highland Fling for Logan

Just a quick thank you the the guys of Harbor Springs for their Fling for Logan.

I have attached a picture of Doug's leap - (Doug - I don't know who you are but WOW - boy can you leap) - other pictures are on the flingforlogan website.

Thanks again

Gareth

Christmas fundraising

Now that it is nearly time to start Christmas Shopping just a wee reminder that you can help raise funds for Logan when you buy online (UK only!).

If you register with our easyfundraising site with Fling for Logan as your chosen cause, then just by clicking the website before you buy (check for instructions) a percentage of the value of your online purchases with participating online retailers (pretty much everyone I could think of) goes to Logan (directly from the retainer).

If you have any questions please email me.

Gareth

NEW: The Eileen McCallum Trust | About the Trust

The Eileen McCallum Trust | About the Trust: "The Eileen McCallum Trust is a voluntary organisation set up by families in Scotland who are affected by Duchenne muscular dystrophy.

The aim of trust is to provide financial support to families affected by DMD to ensure their sons have the equipment and care services they require for an improved quality of life.

Being a voluntary organisation, all funds raised go directly towards those who require it, boys and young men who have been unfortunate enough to be born with such a devastating condition."

Professor Dame Kay Davies on Biomarin Trial - View News Article - Action Duchenne - Fighting for a cure for muscular dystrophy

Professor Dame Kay Davies on Biomarin Trial - View News Article - Action Duchenne - Fighting for a cure for muscular dystrophy: "'The failure of BM195 Phase I trials is obviously very disappointing as it looked so promising in the mdx mice. However, we have new screens coming along which should provide new and better candidates for increasing levels of utrophin. We, like BioMarin, remain committed to utrophin upregulation for the therapy of DMD.'"

Shire announces expansion of Human Genetic Therapies pipeline

Shire announces expansion of Human Genetic Therapies pipeline: "Shire and Acceleron will jointly collaborate on a worldwide development program to advance ACE-031 into a global Phase 2/3 clinical program designed to demonstrate disease modification in DMD patients. Shire will utilize its Lexington, Massachusetts manufacturing facility to produce commercial supplies of the product for both parties. If marketing authorization is received, Acceleron will commercialize ACE-031 in the U.S. and Canada, and Shire has the exclusive right to commercialize the therapy in the rest of the world."

Acceleron Pharma and Shire announce joint development of ACE-031 for DMD

Acceleron Pharma and Shire announce joint development of ACE-031 for DMD: "Acceleron Pharma, Inc., a biopharmaceutical company developing novel therapeutics that modulate the growth of cells and tissues including muscle, bone, fat, red blood cells and the vasculature, and Shire plc (LSE: SHP, NASDAQ: SHPGY), the global specialty biopharmaceutical company, today announced a joint development and commercialization agreement for ACE-031 and other novel molecules targeting the activin receptor type IIB (ActRIIB) pathway. This pathway plays critical roles in regulating the growth of skeletal muscle."

Parent Project Muscular Dystrophy:

Parent Project Muscular Dystrophy:: "Summary of Clinical Trial Presentations from PPMD's Annual Connect Conference
PPMD's Senior Director of Research and Advocacy, Sharon Hesterlee, has written up a detailed summary of the presentations from this summer's Connect Conference regarding clinical trials - one of our most popular sessions of the Conference. PowerPoint presentations from the presenters are available for download, for these presentations, as well as many other Conference sessions"

Progress - slow and painful

On 2 August BioMarin announced that they were stopping the development of their Utrophin upregulation drug.

Utrophin, from what I can determine, is produced by the body when an infant and performs a similar role to that of dystrophin. As the child grows older the body then switches to producing the more effective dystrophin.

The aim behind this research was to get the body to start producing Utrophin in sufficient quantities to compensate, to some degree, from the lack of Dystrophin produced by the boys.

BioMarin has not stopped all their work - merely this particular process - and so whilst it is not the end of the line it is still a bit disappointing and another reminder of how slow and painful progress can be.

 http://www.actionduchenne.org/viewarticle?news=90

International study to improve treatments for Duchenne muscular dystrophy launched

International study to improve treatments for Duchenne muscular dystrophy launched: "A large international study aimed at improving the care of muscular dystrophy patients worldwide is being launched by physicians, physical therapists, and researchers at the University of Rochester Medical Center."