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Featured Blog

Important Vaccinations Recommendations

Posted by Kathi Kinnett on January 23, 2015 at 12:00pm 0 Comments

Vaccinations are very, very important to protect us against infection and disease – but they are also very, very confusing. 

Some vaccines are “live,” some are “attenuated (killed),” some protect against…

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Discussions

Recess in winter

Started by Alissa in General Discussion 19 minutes ago. 0 Replies

Eplerenone & spironolactone

Started by wainaina muiruri in Research. Last reply by Isabella Salamon 3 hours ago. 5 Replies

Hospital / Medical Center for Duchenne in USA

Started by Trinh Nguyen in Research. Last reply by Trinh Nguyen yesterday. 9 Replies

Please help my son to help others

Started by Richard Sizemore in Education. Last reply by Richard Sizemore yesterday. 3 Replies

Latest Activity

Alissa posted a discussion

Recess in winter

How do you all deal with winter and the snow and cold? Andrew seems to have a hard time when its cold and seems to get more muscle fatigued after recess. Not because of moving around but because he's not moving much and he's tensing his muscles because he's freezing. Do you all have a temperature that's the cutoff to allow your child out. Our school policy is 0 degrees. That is too cold for him. Any ideas what I can do about this?
19 minutes ago

Staff
Ryan Fischer posted a blog post

Get Active in Advocacy

2014 was a historic year in our community. 2015 promises to be another critical year in Duchenne and we need you to help keep the momentum going! Just look at the ‘to-do’ list:MD-Care Act amendment implementation beginsNew Drug Applications submissions expected by several companiesThe FDA has stated publicly that producing draft guidance on Duchenne is a priority for them this yearCongress will…See More
55 minutes ago
Profile Iconmarie and Rachel Alonzo joined PPMD Community
3 hours ago
Isabella Salamon replied to wainaina muiruri's discussion Eplerenone & spironolactone
"I was just explaining the positives and negatives of Spironolactone, I wasn't telling you to use a different medicine. In fact, I was advocating in favor of Spironolactone."
3 hours ago
wainaina muiruri replied to wainaina muiruri's discussion Eplerenone & spironolactone
"Hi Isabella,Spironolactone is available where i am ,i am yet to find any pharmacist stocking eplerenone.So i think i will stick to Spironolactone.Thank you."
7 hours ago
Isabella Salamon replied to David's discussion How can parents help ppmd get a chunk of this research money?
"Oh, I understand, thanks for clarifying."
20 hours ago
Profile IconParent Project Muscular Dystrophy via Facebook
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Duchenne is incredibly complicated and on any given day we have a thousand different questions. We want to do our best to help get you answers, so we are currently planning a series of webinars that speak to the topics that concern you most. Look for upcoming webinars on: ► Dystrophin (with Professor Francesco Muntoni & PPMD CEO John Porter, PhD) ► Orthopedic Interventions ► IEPs ► Peer Issues (Including Bullying) ► How You Can Advocate with Us What are some other topics you would like…

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Facebookyesterday · Reply
David replied to David's discussion How can parents help ppmd get a chunk of this research money?
"When politicians announce something like this they often have the $$ but only short list of projects to fund. By the time it gets to congress, the more tangible projects the better. So, we need to act fast to convince congress that DMD treatments…"
yesterday
Andrew Kerr replied to David's discussion How can parents help ppmd get a chunk of this research money?
"Isabella, There are actually some treatments being developed that could help all kids with DMD, like myostatin inhibitors and utrophin up-regulators that should help all kids with DMD regardless the specific mutation they have."
yesterday
Tony and Jen Dumm commented on John D. Porter, PhD's blog post Where the Long, Winding Path has Led
"Thank you for serving our boys!"
yesterday
Trinh Nguyen replied to Trinh Nguyen's discussion Hospital / Medical Center for Duchenne in USA
"Hi Isabella, Yes, I heard Cincinnati is so good. Luckily you can go there. Stay strong. Trinh"
yesterday
Amber commented on PPMD's group Adolescence (age 7-12)
"My son is 6. He is missing exons 48-50. I am trying to reach out to people in the Iowa area."
yesterday
Amber joined PPMD's group
yesterday
Richard Sizemore replied to Richard Sizemore's discussion Please help my son to help others
"Many thanks Lynne.  That is extremely helpful!!  I have requested to join about half dozen of the group pages and have already been added to several and have posted on those.  I had no idea that these Facebook groups existed.…"
yesterday
Profile IconParent Project Muscular Dystrophy via Facebook
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When you rely on vital medical equipment, having a plan for emergency situations such as a power failure is extremely important. To all our friends in the Northeast bracing for Winter Storm Juno, here are some helpful guides regarding power failure safety plans: ► Life and Breath – Planning for Power Failure Guide: http://dmdpathfinders.org.uk/2014/07/22/life-and-breath/ (This factsheet contains a variety of information and strategies, from adults with Duchenne and similar types of…

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Facebookyesterday · Reply
Lynne Nicholson replied to Richard Sizemore's discussion Please help my son to help others
"Hi Richard, There are a number of Facebook groups that you may want to try. See the screenshot attached. I'm positive you'll get a fantastic response. What a great topic for a thesis. Also an area of study that needs some serious…"
yesterday
 
 
 

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