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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

We did it! Because of your commitment & courage!

Posted on January 3, 2018 at 9:30am 0 Comments



Parent Project Muscular Dystrophy believes in the promise that gene therapy holds for the Duchenne community. And so we set an ambitious fundraising goal for our Gene Therapy Initiative. In fact, $500,000 is our largest fundraising goal ever.



And once…

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Latest Activity


Staff
PPMD posted an event
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2018 Advocacy Conference at Washington, D.C.

March 4, 2018 to March 6, 2018
Come and advocate for Duchenne directly with Members of Congress March 4-6 in Washington, DC.  Register todaySee More
Friday
Julie Crudele commented on PPMD's blog post Understanding Gene Therapy: The Screening Process
"Will each trial run the same test and would that mean I would be excluded from all studies?  All of these first studies are using AAV and will be running the same antibody titer testing. While it is true that all the groups will be doing the…"
Friday
Keith & Jill VE favorited PPMD's blog post The 2018 End Duchenne Tour – Coming to a City Near You!
Jan 14

Staff
PPMD posted an event
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Shake It To End Duchenne at Menomonie Middle School Gym

February 24, 2018 from 9am to 10:30am
Cost: We kindly ask you to make a donation to participate. No amount is too small! HELP BRETT BOETTCHER, TOM PLATZ AND MARK PLATZ, THREE…See More
Jan 10

Staff
PPMD's 2 events were featured
Jan 4

Staff
PPMD posted a blog post

We did it! Because of your commitment & courage!

Parent Project Muscular Dystrophy believes in the promise that gene therapy holds for the Duchenne community. And so we set an ambitious fundraising goal for our Gene Therapy Initiative. In fact, $500,000 is our largest fundraising goal ever. And once again, you—our incredibly dedicated community—really came through. You not only matched but exceeded our…See More
Jan 3

Staff
PPMD posted a blog post

Two days left to reach our goal

I am a 22 year old living with Duchenne, and opportunities for clinical trial participation are few and far between. It is one of the frustrating realities of my diagnosis and my age. Although it has never swayed my commitment to this community, I have to be honest. It can be discouraging at times.But gene therapy is likely to be a game changer for adults…See More
Dec 30, 2017

Staff
PPMD posted a blog post

Great News: Match extended by PPMD board!

I have some exciting news: Your response to Sean and Mindy Rice’s generous matching gift of $200,000 has been incredibly inspiring to the Parent Project Muscular Dystrophy board. You’ve shown us that PPMD’s Gene Therapy Initiative matters to you, and we want to keep up the momentum.…See More
Dec 26, 2017

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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