Author Archives: Richard

About Richard

Inventor, entrepreneur, father, medical device manager.

Myotonic Dystrophy Fundraiser – MDA

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A Golf Fundraiser is being held today Sept 17 2012 for both Duchenne and Myotonic Muscular Dystrophy. The tournament is in Santa Ana, CA and begins at noon

Bade and Fisher families, who have been friends for over 70 years. The inspiration for the Bade Memorial Golf Tournament began in honor of Charlie Bade. Charlie,a golf enthusiast, was heartbroken when his dear friends’ grandson, Alex Fisher, was diagnosed with Duchenne muscular dystrophy and later his son, Chris,and grandchildren were diagnosed with Myotonic muscular dystrophy(a disease they inherited from Charlie). By
the second year of the tournament, Chris had passed away. Since his passing, the tournament has come to mean even more. It is the inspiration for two families and spans three generations. Today the tournament continues to celebrate the lives of Charlie and Chris, additionally honoring Alex Fisher and Chris’ children, Scott, Nick and Christine.

Myotonic Fundraiser -Golf Santa Ana CA Sept 17, 2012

Grant Applications Due Today for MDF Fellowships

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The Myotonic Dystrophy Organization continues its strong support of Research by soliciting applications for fellowship grants. This program helps to encourage budding researchers in the field of myotonic Dystrophy. The grants are due today Sept 14th 2012 at 5PM Pacific time. The following is from the MDF website www.myotonic.org

Grant Applications

Call for Postdoctoral Fellowship Applications

The Myotonic Dystrophy Foundation (MDF) is pleased to announce the 5th annual Fund-A-Fellow program to support innovative research on myotonic dystrophy. On January 1, 2013, MDF will award a number of $100,000 postdoctoral research fellowships, each providing two years of support at $50,000 per fellowship, per year.

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Provigil Survey Finds Strong Support From Myotonic Dystrophy Patients

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For quite a few years, I have been strongly advocating the use of Provigil the brand name for modafinil for helping with sleep related issues n Myotonic Dystrophy. Many patients with myotonic dystrophy have tremendous issues with excessive sleep and sleep disruptions.  A study from France in 2009 concluded that a controlled study showed “no significant effects on daytime sleepiness” This study puzzled me as many patients reported very good results from this drug.

A survey conducted by the Myotonic Dystrophy Support Group,  MDSG in England has concluded that over 80% of survey respondents found that the drug had a marked benefit or a dramatic benefit. This concurs with the informal feedback that I have had here in the USA. This also focuses attention on patient centered approaches versus medical centered approaches. Patient centered approaches are very important to give direct patient feedback rather than just visibility to medical professionals opinions based on limited patient facts.

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Myotonic Dystrophy – A preventable disease – Why HealthCare Reform is Needed

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Christopher M is a happy contented 22-year-old man. He functions at a 2-year-old level, requires 24/7 supervision, has multiple medical problems, Brain, lungs, GI tract, Heart, Muscles. His medical costs to date are over $2 million dollars and education and other support over $1 million. Christopher M has congenital  myotonic dystrophy a neuromuscular disease with no cure, no treatment except symptom relief.  This congenital form is caused by the conception and birth or a child to a mother who has the adult form of the disease. Whats has even more impact is that each generation with myotonic dystrophy the children get sicker and have more and more severe symptoms.

Both the these diseases DM1 and the congenital form of the disease (CMD) can be prevented by using Pre-Implant Genetics (PGD) along with in vitro fertilization  (IVF) for those who wish to have a health child. Myotonic Dystrophy is preventable in most cases, except where religious belief would interfere with IVF.

 

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Staying upright with a Neuromuscular disease like Myotonic Dystrophy

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Staying Upright with a Neuromuscular Disease

From: Multiple Sclerosis Society Quest newsletter, written by Christan Medvescek

Some people have nightmares about falling off cliffs. Brad Williams has nightmares about falling — period.

“Whenever I’m walking, falling down is always the major thought on my mind,” says Williams, 39, of Alexandria, Va. “It has to be on my mind a lot for me to be dreaming about it.”

Williams has Miyoshi distal myopathy, a slowly progressive form of muscular dystrophy that primarily affects the extremities. He hosts an MDA Internet chat under the nickname “dysf,” and notes that other chat participants also have reported falling nightmares. “It’s like a flying-falling dream, except it’s just about falling down.”

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