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Parent Project Muscular Dystrophy Awards $148,000 Grant to University of Washington

Posted by PPMD on April 20, 2015 at 11:00am 0 Comments

Parent Project Muscular Dystrophy (PPMD) has awarded University of Washington a $148,000 grant to continue the functional analysis of spectrin-like repeats in dystrophin. Led by Stanley C. Froehner, PhD, Sackler professor and chair of the Department of Physiology & Biophysics at University of Washington, this grant will provide funding so that more research can be completed before the team submits to the National Institutes of Health (NIH) for additional…

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Candice Wright posted a 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? A dive appreciated.

Recess. 2nd Grade. Balls Flying. Fast Running 2nd-5th graders "swooshing" past from behind. The Aide is chatting with the recess monitor. Now there is nothing to grab onto for balance. An Intense fear of falling masqueraded by a posed appearance of just fine. Longing to horse around with his friends on the play structure, he takes a deep breath and navigates the 5 short unstable steps through what seems to him like like an ocean of tan bark to join them from below. He made it, but feels…See More
8 hours ago
David posted a discussion

Bring on the capitalists!

Yes it is important to raise awareness of research and charitable events.But, don't fall to mention the money to be made! The latest reports are rather impressive, and we all know what motivates many people is NOT charity but cash.…See More
yesterday
Profile IconParent Project Muscular Dystrophy via Facebook
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Over the last week you've heard us talk a lot about the potential that new technologies will have for our community to preserve muscle strength and help support independence for people with Duchenne. PPMD is excited to announce an entire session at this year’s Connect Conference in Washington, DC, dedicated to our Robotics Initiative! Traditionally PPMD’s Connect Conference has wrapped up on Sunday morning. But this year we are taking advantage of the time we have on…

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Profile IconCarolyn Paradise and Alan Berry joined PPMD Community
Friday
Shawn replied to Shawn's discussion Deflazacort no longer available in the US?
"Was finally able to reach someone at the FDA and had to provide a letter from our neurologist stating the condition and why we needed the medicine. Also needed to send them the Rx before they would release it. Still haven't gotten it…"
Friday
Profile IconParent Project Muscular Dystrophy via Facebook
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#letsinnovate Another project PPMD is excited to support through our Robotics Initiative this spring is the “Solid Suit,” a soft, wearable assistive device for people with Duchenne. Conceptually, the Solid Suit could be worn under one’s clothing next to his/her skin (picture Spiderman’s suit). It is not yet known whether the project will yield a full body suit, an upper body suit to enhance upper body function, or a lower body suit to enhance lower limb function and…

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Profile IconParent Project Muscular Dystrophy via Facebook
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Meet Leigh Pernosky, our latest Run For Our Sons Runner in the Spotlight! Leigh is mom to 10 year old Warrick, and she's on a running mission to save his life. http://bit.ly/1yrEfYi

Run For Our Sons

Meet Leigh Pernosky, our latest Runner in the Spotlight! Leigh is mom to 10 year old Warrick, and she's on a running mission to save his life.…

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Alpa Shah posted a discussion

Prednisone daily versus weekend (high dose 2 days per week)

Dear friends,Our son Krishna was diagnosed last Oct and he turned 7 in December 2014. He has been on a weekend dose of Prednisone for a little over 6 months now. We started at 50mg per day and have gone up to 100mg per day which our doctor suggests is the stable dose for weekend regimen. We have had no weight gain issues but do see behavior issues. Overall I donot see much difference in his muscle strength from starting steroids. He is ambulaotry and does stairs as well. I'm looking for some…See More
Thursday
Alpa Shah commented on Pat Furlong's blog post A Light Goes Out – Goodbye to Ben Cumbo, PAAC Member
"Ben - Thank you for everything you have done for our sons. May your soul rest in peace and continue to provide strength to your loved ones. "
Thursday
Shelly commented on Pat Furlong's blog post A Light Goes Out – Goodbye to Ben Cumbo, PAAC Member
"My eyes are tearing down..i can't help...its big loss. May his soul depart in peace. I also salute him."
Thursday
Pooja Gupta joined Bains's group
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India

For folks to share information about any research happening in India for Duchenne.
Thursday
Pooja Gupta commented on BHARAT CH. TAMULY's photo
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Rimon

"That subtle constant pain is killing. My son is 11.5 now. He is also fond of computers. See his blog if you would like to. Following is the link https://plus.google.com/100637757731511628928/posts"
Thursday
Jennifer Bauer commented on Pat Furlong's blog post A Light Goes Out – Goodbye to Ben Cumbo, PAAC Member
"I am so sorry to hear of the loss of Ben.  He was in the PAAC group with my brother, Matt. I am sure all the men in the group are devastated right now."
Wednesday
Klaartje Spijkers commented on Pat Furlong's blog post A Light Goes Out – Goodbye to Ben Cumbo, PAAC Member
"Farewell Ben, brave warrior. I salute you and your loved ones. Your brave life is an example for our life and many others with Duchenne. Thank you and fare well Thank you Pat for sharing "
Wednesday
Profile IconParent Project Muscular Dystrophy via Facebook
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PPMD is heartbroken to share that PAAC member Ben Cumbo died last night at the age of 27. Ben was an extraordinary individual, a magnificent force of nature. His presence made you smile, want to sit closer, to listen, to hang on every word. He was wise, intelligent, and kind. He was devoted to ‘move the needle’ for muscular dystrophy, for disabilities, for humanity. While Heaven is brighter today, our world has lost a great light.…

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Staff
Pat Furlong posted a blog post

A Light Goes Out – Goodbye to Ben Cumbo, PAAC Member

Ben Cumbo died last night. While Heaven is brighter today, our world has lost a great light. I first met Ben in 2001. We testified about the importance of the MD-CARE Act. He was very young then, but his wisdom apparent. He talked about the cost of a Stealth bomber, on average $737 million each. He asked Senator Spector if he…See More
Wednesday
 
 
 

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