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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 Hiring Freeze Lifted

Posted on June 15, 2017 at 11:53am 0 Comments

Recently, FDA Commissioner Scott Gottlieb announced that the hiring freeze, instituted on January 23, has been lifted.

This reversal means that the FDA can begin to fill vacancies – needed resources for continued research into rare disease treatments and for the review and…

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Latest Activity

Emily Wiebe joined PPMD's group
16 hours ago

Staff
PPMD posted blog posts
Jun 15

Staff
PPMD posted a blog post

PPMD’s #EverySingleOne Tour: Gainesville, FL

PPMD's Pat Furlong  Earlier this month, we had the privilege of having our fourth stop in 2017 on PPMD's Every Single One Tour in Gainesville, Florida. We were excited to be able to meet with many families and professionals to discuss issues around…See More
Jun 14

Staff
PPMD posted events
Jun 9
douglas michael brienzo might attend PPMD's event
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[Upcoming Webinar] ESSENCE: Sarepta’s Exon 45 and 53 Skipping Study at Online Webinar - Eastern Time Zone

June 7, 2017 from 1pm to 2pm
Wednesday, June 7 at 1:00 PM EDTPlease join Parent Project Muscular Dystrophy and Sarepta Therapeutics as we host a webinar Wednesday, June 7 at 1:00 PM EDT for an overview of Sarepta’s pivotal study investigating SRP-4045 and SRP-4053 for the treatment of Duchenne muscular dystrophy.Host:Ryan Fischer, SVP Community Engagement, Parent Project Muscular DystrophySpeaker:Genevieve Laforet, MD, PhD, ESSENCE Study Medical DirectorGenevieve Laforet, MD, PhD, is a medical director at Sarepta…See More
Jun 7
Profile IconGreg and Fran Burdick and Carlos Marazzi are attending PPMD's event
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[Upcoming Webinar] ESSENCE: Sarepta’s Exon 45 and 53 Skipping Study at Online Webinar - Eastern Time Zone

June 7, 2017 from 1pm to 2pm
Wednesday, June 7 at 1:00 PM EDTPlease join Parent Project Muscular Dystrophy and Sarepta Therapeutics as we host a webinar Wednesday, June 7 at 1:00 PM EDT for an overview of Sarepta’s pivotal study investigating SRP-4045 and SRP-4053 for the treatment of Duchenne muscular dystrophy.Host:Ryan Fischer, SVP Community Engagement, Parent Project Muscular DystrophySpeaker:Genevieve Laforet, MD, PhD, ESSENCE Study Medical DirectorGenevieve Laforet, MD, PhD, is a medical director at Sarepta…See More
Jun 7
Cecile I. Ardrey, BSN, RN is attending PPMD's event
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[Upcoming Webinar] ESSENCE: Sarepta’s Exon 45 and 53 Skipping Study at Online Webinar - Eastern Time Zone

June 7, 2017 from 1pm to 2pm
Wednesday, June 7 at 1:00 PM EDTPlease join Parent Project Muscular Dystrophy and Sarepta Therapeutics as we host a webinar Wednesday, June 7 at 1:00 PM EDT for an overview of Sarepta’s pivotal study investigating SRP-4045 and SRP-4053 for the treatment of Duchenne muscular dystrophy.Host:Ryan Fischer, SVP Community Engagement, Parent Project Muscular DystrophySpeaker:Genevieve Laforet, MD, PhD, ESSENCE Study Medical DirectorGenevieve Laforet, MD, PhD, is a medical director at Sarepta…See More
Jun 6

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

September 9, 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
Jun 6

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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