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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

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StaffRyan 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beginsNew Drug Applications submissions expected by several companiesThe FDA has stated publicly that producing draft guidance on Duchenne is a priority for them this yearCongress will…See More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

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marie 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

via Facebook

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…

yesterday · 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

Adolescence (age 7-12)

yesterday

6 Comments 2 Favorites

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

via Facebook

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…

yesterday · 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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Recess in winter

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How can parents help ppmd get a chunk of this research money?

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Recess in winter

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