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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
Hackensack, NJ

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Latest Activity

Gabija commented on PPMD's group Duplications
"My two sons age are 8 month and 9 years. Duplication of Exons 18.I am a carrier..;("
Gabija joined PPMD's group
Sara Catabay joined PPMD's group
Jul 13

PPMD posted a blog post
Jul 13

PPMD posted events
Jul 12

PPMD posted an event

RFOS 2017 In Memory of Joshua Arndt 5K at Buffalo, NY

August 19, 2017 all day
Run For Our Sons 2017 In Memory of Joshua ArndtOn Saturday August 19, 2017 from 9 AM - 2 PM, family members and friends will be participating in a 5K run/walk at Delaware Park Ring Road Buffalo, NY.Registration starts at 8:30 AM or you can register online.For more information about the 5K, visit the race websiteSee More
Jul 11

PPMD posted a blog post

PPMD to Host Duchenne Drug Development Roundtable During 23rd Annual Connect Conference

 PPMD will host our annual Duchenne Drug Development Roundtable (DDDR) during the 23rd Annual Connect Conference later today. Established more than seven years ago, PPMD's DDDR is a group of committed innovators representing industry and relevant stakeholders that has the goal of accelerating the development of meaningful treatments for Duchenne through open discussion and working…See More
Jun 30

PPMD posted a blog post

PPMD Convenes International Experts for Inflammation and Immunity in Duchenne Muscular Dystrophy Workshop

Today, PPMD is convening medical experts from around the world for a workshop exploring inflammation and immunity in Duchenne on the eve of our 23rd Annual Connect Conference.In January, PPMD organized a Critical Path Innovation Meeting with…See More
Jun 28

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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