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PPMD's 2015 Connect Conference Agenda: Now Available!

Posted by PPMD on May 4, 2015 at 5:00pm 0 Comments

PPMD is excited to share with you the agenda for the 21st Annual Connect Conference in Washington, D.C., June 18-21 at the Washington Marriott Wardman Park. Every year our agenda grows and…

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Latest Activity

brian phillip nicholoff posted a blog post
yesterday
Diane Nier is now a member of PPMD Community
Wednesday
Karen Barnett posted a discussion

At What Age Did Your Child Stop Walking?

My son is almost 14.5 and is still walking unassisted and even climbing stairs.  I never thought when he was diagnosed at 5 that he would still be walking at 14.  I guess I am feeling anxious about it.  When did your child stop walking?  How "normal" is this to still be so mobile at 14?  How will I know when he is going to stop walking and need a wheelchair?  See More
Wednesday
Mariana Livingston posted an event
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Connor's Quest for a Cure at Seattle

May 24, 2015 at 6pm to June 7, 2015 at 7pm
Find more videos like this on PPMD Communityhttp://http://www.parentprojectmd.org/site/TR/Events/2010SiteDesignGREvents?px=1647415&pg=personal&fr_id=1110See More
Tuesday
Mariana Livingston posted a video
Tuesday

Staff
PPMD posted a blog post

PPMD's 2015 Connect Conference: Register for the National Duchenne Rally & Hill Day by June 1

With this year's Annual Connect Conference in Washington, DC, PPMD wanted to take advantage of being in our Nation's Capital and ensure that our Duchenne community leaves an indelible imprint on federal…See More
Tuesday
Profile IconTimothy Barczak, Елена, Aun Bin Yousuf and 2 more joined PPMD Community
Tuesday
Marilyn Ash commented on PPMD's group Duplications
"Hi!  My son is 3 and was just diagnosed with DMD.  He has a duplication of exon 2.  He is still walking and not showing any signs/symptoms.  Thankfully!  My brother had DMD and so I pushed for testing recently.  Our…"
Tuesday
Marilyn Ash joined PPMD's group
Tuesday
Angelique replied to Candice Wright's discussion Anxiety and Stress in Large Public Elementary School: How Much is Too Much? Have You Pulled Your Son From Mainstream School and Transferred Him to. Smaller, Alternative School? Advice appreciated.
"Hi. My son Luc is 5 years old and here in Australia he has started prep. He loves going to school but he struggles to concentrate and he also struggles emotionally. My little gentle boy has started to hit and scratch people, He has a very short fuse…"
Tuesday
Trinh Nguyen replied to Elie Feghali's discussion What is the cost of translarna?
"Hi Nadja, My son has been in phase 3 - double blind and phase 3-extension. I guess he was in placebo group in phase 3 due to his decline. But since phase 3-extension (all take drug), the decline seems slow down, he almost does not fall. Trinh"
Tuesday
Nadja replied to Elie Feghali's discussion What is the cost of translarna?
"How does translarna work?"
Monday
Elie Feghali replied to Elie Feghali's discussion What is the cost of translarna?
"In my case i need for each day 8 tablets 250 mg and 1 tablet 1000 mg which means 3029.5 Euro per day!!!"
Monday
Trinh Nguyen replied to Elie Feghali's discussion What is the cost of translarna?
"I can't imagine who can pay."
Monday
Elie Feghali replied to Elie Feghali's discussion What is the cost of translarna?
"It is an unreasonable cost!! Can anyone pay that price??"
Monday
Trinh Nguyen replied to Elie Feghali's discussion What is the cost of translarna?
"Cost in Germany: 1 box of 30 tablets 125mg : 3822 Euro 1 box of 30 tablets 250mg : 7588 Euro 1 box of 30 tablets 1000mg : 30180 Euro Cost is sky-high."
Monday
 
 
 

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