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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

Marilyn Ash is attending PPMD's event
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PPMD's Every Single [One] Tour: Iowa City, IA at Iowa City, IA

April 1, 2017 all day
Save the Date! Registration for this FREE day-long meeting for families will open a month prior to the event.Sign up to receive email updates from PPMD to be notified when registration opens. ------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…See More
Saturday
Karen commented on PPMD's event PPMD's Every Single [One] Tour: Seattle, WA
"Wow.  This is really early.  If I'm able to attend, I will be late.  Do you have a schedule yet?"
Saturday
Profile IconKaren and Christine Harenberg might attend PPMD's event
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PPMD's Every Single [One] Tour: Seattle, WA at Seattle, WA

March 26, 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 to…See More
Saturday

Staff
PPMD commented on PPMD's event PPMD's Every Single [One] Tour: Seattle, WA
"Hi Christine -- We will be posting registration information by end of day! Check back soon :) "
Friday
Christine Harenberg commented on PPMD's event PPMD's Every Single [One] Tour: Seattle, WA
"Does anyone know when registration for the Every Single One Tour in Seattle will be posted?  I'm trying to find more information about the day and how to register."
Friday

Staff
PPMD posted an event
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UFL Student Physical Therapy Association Golf Outing at Mark Bostick Golf Course

June 24, 2017 all day
The UF Student Physical Therapy Association Presents a Charity Golf Tournament for Parent Project Muscular Dystrophy. When: Saturday, June 24th, 2017 Entry Fee: $80 per person7:45-8:15 AM Registration & hit range balls / putt Shotgun start at 8:30 AM Breakfast & Lunch will be provided Awards Ceremony and Presentation after Play 4 Man Scramble Format includes: Range Balls, Green Fees and Cart Breakfast and Lunch Door PrizesAwards for 1st & 2nd placeAdditional Events: Silent Auction…See More
Wednesday
Jason Flynn is attending PPMD's event
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[Upcoming Webinar] NS Pharma's Exon 53 Skipping Program – Trial Recruitment and Update at Online Webinar - Eastern Time Zone

February 22, 2017 from 1pm to 2pm
Wednesday, February 22 at 1 PM ET Please join Parent Project Muscular Dystrophy and NS Pharma as we host a webinar Wednesday, February 22 at 1:00 PM EST to to provide an update on trial recruitment for NS Pharma's Exon 53 Skipping Program. Dr. Clemens and Lauren Morgenroth will review the study design and provide the most recent updates for the trial that is ongoing in the US.Speakers:Abby BronsonSenior Vice President of Research Strategy, Parent Project Muscular DystrophyPaula R. Clemens,…See More
Tuesday
Mary Krebs is attending PPMD's event
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PPMD's Every Single [One] Tour: Iowa City, IA at Iowa City, IA

April 1, 2017 all day
Save the Date! Registration for this FREE day-long meeting for families will open a month prior to the event.Sign up to receive email updates from PPMD to be notified when registration opens. ------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…See More
Feb 19

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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