Propose research that is important to you
Adding your experiences with Duchenne or Becker to ongoing research is vital to improve care and optimize potential therapies.
But our community can go further. Let’s set the research agenda! Tell us what you wish you knew (or your doctors knew, or therapists knew, or teachers knew, or researchers knew…) about Duchenne or Becker muscular dystrophy.
Be as specific as possible!
Replies to This Discussion
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Permalink Reply by Keith Van Houten on
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I wish someone would invest some money in robotics, to help people gain more independence and reduce the burden on caregivers.
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Permalink Reply by wainaina muiruri on
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It is not easy being a care giver to dmd patient.My back has been giving me problems for an year now,and one of my shoulders too,got me worried if this goes on like that how will i be in another two years,dont want to end up needing a care giver too.That's why i also started checking around on robotics,and came across HAL Suits from Japan's robotics firm Cyberdyne.They seem a bit too good to be true.Are they real?I am sure some of you parents have come across this info before.Follow the link below for a look.Thank you.
http://www.dailymail.co.uk/sciencetech/article-2384930/Robotic-exos...
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I work for one of the premier, non-profit robotics research labs in the world, and we have some wearable robotic technology which I believe could be applied to this application. can you suggest the best targets for developing research sponsorships in this area?
Keith Van Houten said:I wish someone would invest some money in robotics, to help people gain more independence and reduce the burden on caregivers.
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Accept my friend request so I can message you my phone number.
I'm an engineer, 20+ years in the field, and my son has MD. I'll give you the same pitch I gave a university lab last year.
I don't think a heck of a lot of research is required. Technology that would help exists today. There's a lot of good ideas out there. Someone needs to bring it to market in a cost effective way, and insurance reform is required so it's paid for.
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Cyberdyne's HAL Suits is real and being used in Japan for rehabilitation
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Permalink Reply by Karen on
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I would like to know some non-ambulatory end points for clinical trials. The inclusion criteria needs to be expanded.
I would like to know why the FDA is moving so slowly on exon skipping.
How do you get your son to fall a sleep while using noninvasive pulmonary support (bi-bap).
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Permalink Reply by Laurie Paschal on
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I wish providers would realize parents work and boys go to school. We need later appointment times. It's not like we only see them every once in a while, some of us have one or more appointments per week. Missing that much work and school isn't always possible.
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Permalink Reply by Leeandra Arhdeacon on
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I wish teachers would understand that just because he is capable of completing a sentence does not mean that he has the strength to complete every ounce of written homework. His teacher expects written proof of homework even though he has AT to complete his work. I wish that doctors would understand that a change in appointments on their end at last minute can alter our whole week due to his behavior and need for routine and on the other hand if we cancel an appointment last minute due to his lack of sleep or behavior, its necessary because he needs sleep or help transitioning. I wish service providers would offer more than just repetitive suggestions that they utilize for kids across the board. He needs alternatives, not just giving him the same strengthening activities that are given to all the other kids and then dismiss us because strengthening hurts him. I wish family would understand that we can't go on long family vacations and just squeeze into another car…He has a chair, extra bag for meds, urinal, braces, nebulizer and we must stop every hour to give him a stretch! I wish family would understand that we can't just let our kid loose without a constant eye on him, not only because he will get hurt but because on top of Duchenne he also has Autism of which they can't grasp either. I wish service providers would not comment on how large his calves and arms appear, this tells me that they have not done their homework or read any piece of information I have sent. I feel like I am always on edge around everyone due to the unexpected comments or questions that happens at every doctors visit, service or family function. Its enough to make a person go insane. All I ask is for them to please read the information prior to making any comments to me about ANYTHING, but they can't even do that.
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Permalink Reply by David on
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One would think by now parents could access a resource that suggests the best lifts and other mobility equipment vendors in the local area. I have learned the hard way that competition usually stinks and we are stuck with one really lousy service provider. Had I known there was another provider 30 Mi away I would have sent the orders there instead.
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Permalink Reply by Tammy on
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I wish more there was more research on what to feed our boys early on. I've read studies about DMD boys requiring much more protein, however our nutritionist says they do not require anything out of the ordinary prior to steriods, which just doesn't make sense.
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