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PPMD Awards $600,000 Grant to NJIT & Talem for Next Phase of Upper Extremity Exoskeleton

Posted by PPMD on January 18, 2017 at 9:00am 1 Comment

Robotics.

 

Ensuring that the worlds of teens and adults with Duchenne 'grow bigger', as they grow older by expanding their reach – both literally and figuratively.

  

Combing your hair. Lifting a glass to your mouth. Washing your hands. Pressing elevator…

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Discussions

Lisinopril heart medication

Started by anna ndiaye in Research. Last reply by Rahul Deshpande 3 hours ago. 1 Reply

Nicotinamide riboside

Started by Sanja Kogelnik in Research. Last reply by Sanja Kogelnik on Thursday. 4 Replies

Relocating to Nashville

Started by ana das in Research. Last reply by ana das Jan 12. 2 Replies

Latest Activity

Profile IconParent Project Muscular Dystrophy via Facebook
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On Saturday, families from across California gathered together at Children’s Hospital Los Angeles (CHLA) – one of PPMD’s Certified Duchenne Care Centers – to hear the latest updates in Duchenne research, advocacy, and care. Thank you to all of our presenters, the extraordinary clinical providers at CHLA, and our amazing families who joined us for an information-packed day. A wrap-up with notes will be available soon. Next stop... Seattle, WA! View PPMD's 2017…

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Facebook1 hour ago · Reply
Rahul Deshpande replied to anna ndiaye's discussion Lisinopril heart medication
"Lisinopril is generally the first Heart medicine given to DMD kids. As per my understanding it is started at the age of 7-8. Pl check with your son's Cardiologist. "
3 hours ago
Profile IconSharon K. Harshman and Ketti Davis joined PPMD Community
4 hours ago
Johanna Schroeder is attending PPMD's event
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2017 Annual Connect Conference at Chicago, IL

June 29, 2017 to July 2, 2017
Save the date for PPMD's 2017 Connect Conference!Parent Project Muscular Dystrophy's Annual Connect Conference is a unique convergence of industry partners, scientific leaders, medical providers, people living with Duchenne, and their families. This exceptional meeting has grown to be recognized worldwide as the foremost Duchenne muscular dystrophy meeting. But more than that, it is a way…See More
17 hours ago
Manuel Antonio Quintero shared PPMD's event on Facebook
yesterday
Steve Heller is attending PPMD's event
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[Upcoming Webinar] Summit's Utrophin Modulation Program at Online Webinar - Eastern Time Zone

January 25, 2017 from 11am to 12pm
Wednesday, January 25 at 11:00 AM ET Please join PPMD and Summit on Wednesday, January 25 at 11:00 AM ET for an educational webinar on utrophin modulation, an approach for Duchenne that has the potential to treat all patients. Summit's Jon Tinsley, Chief Scientific Officer, and Ralf Rosskamp, Chief Medical Officer, will discuss:The basic biology of utrophinHow Summit is working to understand and characterize the activity of utrophin modulators through biomarkers in muscle biopsiesA brief…See More
Friday
Profile IconParent Project Muscular Dystrophy via Facebook
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ICYMI, ReveraGen BioPharma CEO Dr. Eric Hoffman joined us earlier this week for a webinar discussion on vamorolone (VBP15) clinical trials in Duchenne. Dr. Hoffman presented a brief history of the vamorolone program, explained current and anticipated clinical trials, and answered questions from the community. You can watch the recording of the webinar below.

[Webinar] Vamorolone (VBP15) Clinical Trials in Duchenne - January…

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Profile IconMargot Bosman, Jill Booty, Kathleen Lawry and 2 more joined PPMD Community
Friday
Profile IconParent Project Muscular Dystrophy via Facebook
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PPMD is excited to announce our 13th Certified Duchenne Care Center (CDCC) – the Yale New Haven Children's Hospital's Muscular Dystrophy Program! The Pediatric Muscular Dystrophy Program at YNHCH is co-directed by Brian Smith, MD and Cristian Ionita, MD. Dr. Ionita was recently recruited from Seattle Children's Hospital (also a CDCC), and is joining a compassionate team of experienced Duchenne providers. We are thrilled to award the YNHCH team certification for their…

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FacebookThursday · Reply
Profile IconGuillermo Raspa, Janelle Hajjar and Heidi Kirchner are attending PPMD's event
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[Upcoming Webinar] Summit's Utrophin Modulation Program at Online Webinar - Eastern Time Zone

January 25, 2017 from 11am to 12pm
Wednesday, January 25 at 11:00 AM ET Please join PPMD and Summit on Wednesday, January 25 at 11:00 AM ET for an educational webinar on utrophin modulation, an approach for Duchenne that has the potential to treat all patients. Summit's Jon Tinsley, Chief Scientific Officer, and Ralf Rosskamp, Chief Medical Officer, will discuss:The basic biology of utrophinHow Summit is working to understand and characterize the activity of utrophin modulators through biomarkers in muscle biopsiesA brief…See More
Thursday

Staff
PPMD posted a blog post

PPMD Designates Yale New Haven Children's Hospital a Certified Duchenne Care Center

Yale New Haven Children's Hospital's Muscular Dystrophy Program became the 13th clinic named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD). PPMD's…See More
Thursday
Stephanie Schneider might attend PPMD's event
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[Upcoming Webinar] Summit's Utrophin Modulation Program at Online Webinar - Eastern Time Zone

January 25, 2017 from 11am to 12pm
Wednesday, January 25 at 11:00 AM ET Please join PPMD and Summit on Wednesday, January 25 at 11:00 AM ET for an educational webinar on utrophin modulation, an approach for Duchenne that has the potential to treat all patients. Summit's Jon Tinsley, Chief Scientific Officer, and Ralf Rosskamp, Chief Medical Officer, will discuss:The basic biology of utrophinHow Summit is working to understand and characterize the activity of utrophin modulators through biomarkers in muscle biopsiesA brief…See More
Thursday
Profile IconParent Project Muscular Dystrophy via Facebook
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Webinar: Summit's Utrophin Modulation Program

Webinar: Summit's Utrophin Modulation Program

Please join PPMD and Summit on Wednesday, January 25 at 11:00 AM ET for an educational webinar on utrophin modulation, an approach for Duchenne that has the potential to treat all patients. Summit's Jon Tinsley, Chief Scientific Officer, and Ralf Rosskamp, Chief Medical Officer, will discuss: - The…

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FacebookThursday · Reply

Staff
PPMD posted an event
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[Upcoming Webinar] Summit's Utrophin Modulation Program at Online Webinar - Eastern Time Zone

January 25, 2017 from 11am to 12pm
Wednesday, January 25 at 11:00 AM ET Please join PPMD and Summit on Wednesday, January 25 at 11:00 AM ET for an educational webinar on utrophin modulation, an approach for Duchenne that has the potential to treat all patients. Summit's Jon Tinsley, Chief Scientific Officer, and Ralf Rosskamp, Chief Medical Officer, will discuss:The basic biology of utrophinHow Summit is working to understand and characterize the activity of utrophin modulators through biomarkers in muscle biopsiesA brief…See More
Thursday
Sanja Kogelnik replied to Sanja Kogelnik's discussion Nicotinamide riboside
"I really hope that this will work, I am glad that  your son is doing  well.  My son is ok, he is still very young. I assume that you talked to scientists Johan Auwerx ? I Will try this vitamin to :)"
Thursday
Nadja replied to Sanja Kogelnik's discussion Nicotinamide riboside
"Hi sanja No not yet at the moment But he is very strong i am so happy about this He will be 7 in may How is your son doing? Best wishes Nadja"
Wednesday
 
 
 

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