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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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Latest Activity


Staff
PPMD updated an event
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Holy Mackerel Brewery Event to End Duchenne at Holy Mackerel Brewery

September 24, 2017 from 1pm to 4pm
When: September 24, 2017Where: Holy Mackerel Brewery  3260 NW 23rd Avenue, Suite 400 Pompano Beach FL 33069Come watch the Miami Dolphins vs NY Jets game!Includes buffet lunch, first beer or glass of wine, and sweet surprises…See More
3 hours ago

Staff
PPMD updated an event
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FACES NY - World Duchenne Awareness Night at Buffalo Yacht Club

September 7, 2017 from 6pm to 9pm
When: September 7, 2017  6-9 PMWhere: Buffalo Yacht Club  1 Porter Avenue Buffalo NY 14201Come join us in celebrating World Duchenne Awareness Day by watching the Peace Bridge turn RED at the Buffalo Yacht Club!Silent auction/raffle tickets will also be available for purchase at event.Please buy in advance-there will be limited dinner tickets at the door.…See More
Monday
Owen Rogers commented on PPMD's event [Upcoming Webinar] Gene Therapy for Duchenne
"Can you post the link to the recording please, thanks"
Saturday
Owen Rogers is attending PPMD's event
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[Upcoming Webinar] Gene Therapy for Duchenne at Online Webinar - Eastern Time Zone

August 9, 2017 from 1pm to 2pm
Wednesday, August 9 at 1:00 PM ETWith trials in gene therapy on the horizon, and terms like "cassette", "construct", "promoter", and "transduce" being thrown around, we want to ensure that you, our Duchenne Community, has all the knowledge you need to navigate the world of gene therapy.PPMD's upcoming webinar on Wednesday, August 9 at 1:00 PM ET will focus on understanding the different therapies that are being developed that are commonly referred to as gene therapy, including micro-dystrophin…See More
Saturday

Staff
PPMD posted events
Aug 10

Staff
PPMD's event was featured
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PPMD's Every Single [One] Tour: Charleston, WV at Charleston, WV

September 9, 2017 all day
Registration for this FREE day-long meeting for families is now open! Click here to register.------In an effort to reach every single family facing a Duchenne diagnosis in the U.S., PPMD has launched a multi-year community experience called the Every Single [One] Tour. Combining each of the pillars that make up PPMD’s mission – To End Duchenne – the Every Single [One] Tour brings updates on research, advocacy, and care…See More
Aug 10
Manuel Antonio Quintero is attending PPMD's event
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[Upcoming Webinar] Gene Therapy for Duchenne at Online Webinar - Eastern Time Zone

August 9, 2017 from 1pm to 2pm
Wednesday, August 9 at 1:00 PM ETWith trials in gene therapy on the horizon, and terms like "cassette", "construct", "promoter", and "transduce" being thrown around, we want to ensure that you, our Duchenne Community, has all the knowledge you need to navigate the world of gene therapy.PPMD's upcoming webinar on Wednesday, August 9 at 1:00 PM ET will focus on understanding the different therapies that are being developed that are commonly referred to as gene therapy, including micro-dystrophin…See More
Aug 8

Staff
PPMD posted an event
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Turkey Trot to End Duchenne at Players Club Golf Course

November 23, 2017 from 8:30am to 10:30am
Honoring Louie Facca, 10 years old with DuchenneRACE DETAILSThanksgiving MorningNovember 23rd, 2017Players Club Golf Course 12101 Deer Creek Dr.  Omaha, NE T-SHIRT PICKUP/AUCTIONWednesday, November 22nd, 2017 4-6 PMPlayers Club Golf Course RACE MENUPilgrim Promenade (walk/run)   2 mileTurkey Trail Trot (run)      5KFor more information on how to register or donate, click here!See More
Aug 7

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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