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Parent Project Muscular Dystrophy (PPMD)

Profile Information

About me:
Parent Project Muscular Dystrophy’s mission is to end Duchenne. We accelerate research, raise our voices in Washington, demand optimal care for all young men, and educate the global community.

email: Community@ParentProjectMD.org
phone: 800-714-5437
City:
Hackensack, NJ

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PPMD's Blog

FDA Announces Pediatric Advisory Committee Meeting on May 18

Posted on April 24, 2017 at 12:30pm 0 Comments

On May 18, 2017, FDA’s Pediatric Advisory Committee will convene to consider the issue of allowing in-dwelling ports in Sarepta’s…

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PPMD posted a blog post
14 hours ago

Staff
PPMD posted a blog post

PTC Therapeutics Completes Acquisition of Emflaza™ for the Treatment of Duchenne in the U.S.

Today, PTC Therapeutics announced that they have completed their acquisition of Emflaza™ (deflazacort) ahead of schedule, following early conclusion of the anti-trust review.PTC will be hosting a call with the Duchenne community the week of May 8 to provide details on the plan for the launch of Emflaza. We look forward to learning more from PTC in the coming weeks and will keep you posted on call-in…See More
Thursday
Will Farr might attend PPMD's event
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[Upcoming Webinar] Givinostat in Duchenne at Online Webinar - Eastern Time Zone

April 26, 2017 from 1pm to 2pm
Wednesday, April 26 at 1:00 PM ESTPlease join Parent Project Muscular Dystrophy and Italfarmaco as we host a webinar Wednesday, April 26 at 1:00 PM ET to discuss Italfarmaco's investigational drug Givinostat, which is a histone deacetylase (HDAC) inhibitor.Our speakers will present:A brief overview of ItalfarmacoThe characteristics of Givinostat and how it works in DuchenneA history of the development program, including pre-clinical results and preliminary results of the current Phase 2…See More
Wednesday
Janelle Hajjar is attending PPMD's event
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[Upcoming Webinar] Givinostat in Duchenne at Online Webinar - Eastern Time Zone

April 26, 2017 from 1pm to 2pm
Wednesday, April 26 at 1:00 PM ESTPlease join Parent Project Muscular Dystrophy and Italfarmaco as we host a webinar Wednesday, April 26 at 1:00 PM ET to discuss Italfarmaco's investigational drug Givinostat, which is a histone deacetylase (HDAC) inhibitor.Our speakers will present:A brief overview of ItalfarmacoThe characteristics of Givinostat and how it works in DuchenneA history of the development program, including pre-clinical results and preliminary results of the current Phase 2…See More
Apr 18

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PPMD posted events
Apr 18

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PPMD posted a blog post

Bristol-Myers Squibb Enters into Agreement with Roche to License Anti-Myostatin Compound

Bristol-Myers Squibb (BMS) today announced that it has entered into an agreement to license BMS-986089, an anti-myostatin adnectin in development for Duchenne muscular dystrophy, to Roche. …See More
Apr 13

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PPMD posted events
Apr 12

Staff
PPMD posted events
Apr 11

Comment Wall (19 comments)

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At 6:15am on October 24, 2015, Anca Felicia Lutas said…

Thank you! he always smiles!

At 9:42pm on October 23, 2015, Anca Felicia Lutas said…
Thank you very much!
He always smiles!
At 7:34am on February 18, 2015, Subodh Joshi said…

great effort. is there any thought of initiating this work in india?

i am a 50 years old patient. still working in disability area. much scope for such work here.

At 5:49am on October 16, 2014, Hassan K. Shehu Shehu said…
I lost two of my three children with duchenne dmd,the last one has started to show signs of gowers. He only takes prediniselone for almost six months now ,please help me with advice .
At 5:45pm on March 1, 2012, LYNN JONES said…

I'm sorry if i upset anyone with my message of any families with young boys, we experienced the most wonderful, fulfilling,caring, happy, joyous i could go on and on..of our lives with our darling boy he brought us so much pleasure we miss him so much but we will go on and carry on raising awareness and raising funds for the hospice (derian house) they were a fantastic support and still are   enjoy everyday and live for every moment xxx

At 5:39pm on March 1, 2012, LYNN JONES said…

Thank you for replying to my message, its been the hardest few months of our lives, matthew was our world and we miss him like i cant explain, he was loved so much by all his family. he was such a well and happy boy, his passing came as such a shock it was so sudden and unexpected, we had had such a perfect day with him i still cant believe it happened and how we are coping without him with us.  you read literature regarding the boys condition and me and my husband believed we were so lucky with matthew as he had always been in such good health, we were so lucky. when the boys reach a certain age things change for them and we didnt see it coming (something i will never forgive myself for) the care matthew received once in adult services wasnt the same or as through. thank you once again for replying its good to type away my thoughts xxx love lynn

At 5:32pm on February 22, 2012, cercel alexandra silvia said…

thank you verry much!

At 11:41am on October 27, 2011, Damien Howey said…

thank u and i was wondering how we can get stuff going in North Dakota

At 11:37am on October 24, 2011, Anca Felicia Lutas said…

Thank you!

At 10:35pm on October 7, 2011, Mrs. Joseph Wood said…
Thank you so much! We are hoping to connect with others that are successfully finding ways to improve the quality of life for their sons.. and working to find a cure! I would be blessed by the information you mentioned. I'll take a look at that link. Thank you again for the welcome!
 
 
 

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