Author Archives: Richard

About Richard

Inventor, entrepreneur, father, medical device manager.

MDA Issues Winter Research Grants

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The Muscular Dystrophy Association of the USA (MDA) announced its winter research grants. 13.6 million was awarded including two grants for Myotonic Dystrophy research. One grant to doctor Disney will explore the possible therapeutic effects of small molecule approach for DM2. This would be a strong complement to the DM1 research that is ongoing in his lab.

The other grant to Dr. Mockton is to research the effect of Triplet expansion and stability on the likely course of the Myotonic Dystrophy Disease.

MDA is spending 4.6 of its research grant budget this winter on Myotonic Dystrophy Research.

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Management of Respiratory Issues

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My son Chris has had multiple issues with Pneumonia including multiple hospitalizations and ventilator support. I found this nice article on Respiratory support that is pretty technical. The part on General measures is below and you can link here to the actual article..Respiratory Consequences or Neuromuscular Disease. We have done the following with Chris

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New Myotonic Family Registry Launching In February 2013

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Recently the MDF (Myotonic Dystrophy Foundation) announced the launching of a new patient registry. This registry looks very exciting and apparently will be some kind on interactive database. The database will help both patients and researchers. The patients will benefit by hopefully more easy access to clinical trials that will be starting soon. Researchers benefit by reducing the cost of finding and identifying patients with DM. Click here for the announcement from the MDF  Here is the new logo for the Registry

Make sure to sign up for this registry when it is available later this month

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MDA Canada Last registration date Today Feb 1, 2013 for $300,000 Myotonic Dystrophy Grants

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The Rachel Fund for Myotonic Dystrophy

Muscular Dystrophy Canada and the Institute of Musculoskeletal Health and Arthritis are pleased to announce the third joint competition of the Rachel Fund. Launched originally in 2006, the Rachel Fund is proudly supported by Tribute Communities, a generous donor to Muscular Dystrophy Canada.

Founded over 25 years ago, Tribute Communities is a leading builder of new homes and condominiums with a mission to create distinctive, visionary communities. Our exquisite lowrise communities are enhanced by natural beauty, old-world charm and a friendly ambience. Streetscapes present a fresh, bright appeal, with heritage touches that celebrate the past. Our condominiums are vibrant expressions of urban style, with iconic architecture, sophisticated designs and spectacular amenities. Whether living in a signature Tribute single family home or an elegant Tribute condominium, our customers can be sure of one thing: their home has been built by passionate people who truly care about bringing dreams to life. This is an absolute wonderful company that is very supportive of its community!

Big Business Potential in Myotonic Dystrophy Drugs

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My most recent blog post on the “Race for the Cure” For Myotonic Dystrophy drugs and a potential cure had stated that the market size that is reachable for this disease is between 2-5 Billion dollars. Today a recent Wall St. Journal Article “The Big Business of Orphan Drugs” confirms that the market for These type of Orphan Drugs is extremely lucrative for companies and patients alike. Read about Small is Lucrative for Drug Companies. The Wall St. Journal article of course is not available without a Subscription.

The Wall street journal reported that incentives from the FDA to develop so called orphan drugs can mean quicker and more certain approval, tax benefits for the developer, and seven years of protection from competition after approval. Orphan drugs are defined as experimental treatments for disease with fewer than 200,000 patients at one time.

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