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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

In Honor of Moms: A Note from Tom Furlong

Posted on May 10, 2017 at 10:30am 0 Comments

This Mother’s Day, thank someone for their role in the fight to end Duchenne.

If you’re reading this blog, chances are you know my wife, Pat Furlong. For 23 years now, Pat has been leading Parent Project Muscular Dystrophy (PPMD) and the fight to end Duchenne. Many of you have told me over the years that Pat has been a source of comfort,…

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Latest Activity

David commented on PPMD's blog post Capricor Therapeutics Announces Positive Six-Month Results from the Randomized Phase I/II HOPE Clinical Trial in Duchenne Muscular Dystrophy
"When an all-star, hands down hall of famer joins your favorite team, it's a great…"
Monday
Steve Heller is attending PPMD's event
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[Upcoming Webinar] Nationwide Children’s Hospital Carrier Study at Online Webinar - Eastern Time Zone

May 17, 2017 from 1pm to 2pm
Wednesday, May 17 at 1:00 PM EDTPlease join Parent Project Muscular Dystrophy as we host a webinar Wednesday, May 17 at 1:00 PM EDT for a discussion on the Nationwide Children’s Hospital Carrier Study. Dr. Kan Hor and Dr. May Ling Mah will discuss cardiac disease in females who are carriers of the Duchenne genetic mutation – what we know, what we do not know, and what we hope to learn.Host:Kathi Kinnett, SVP Clinical Care, Parent Project Muscular DystrophySpeakers:Kan Hor, MD, Nationwide…See More
May 16
Janelle Hajjar is attending PPMD's event
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[Upcoming Webinar] Nationwide Children’s Hospital Carrier Study at Online Webinar - Eastern Time Zone

May 17, 2017 from 1pm to 2pm
Wednesday, May 17 at 1:00 PM EDTPlease join Parent Project Muscular Dystrophy as we host a webinar Wednesday, May 17 at 1:00 PM EDT for a discussion on the Nationwide Children’s Hospital Carrier Study. Dr. Kan Hor and Dr. May Ling Mah will discuss cardiac disease in females who are carriers of the Duchenne genetic mutation – what we know, what we do not know, and what we hope to learn.Host:Kathi Kinnett, SVP Clinical Care, Parent Project Muscular DystrophySpeakers:Kan Hor, MD, Nationwide…See More
May 11

Staff
PPMD posted an event
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[Upcoming Webinar] Nationwide Children’s Hospital Carrier Study at Online Webinar - Eastern Time Zone

May 17, 2017 from 1pm to 2pm
Wednesday, May 17 at 1:00 PM EDTPlease join Parent Project Muscular Dystrophy as we host a webinar Wednesday, May 17 at 1:00 PM EDT for a discussion on the Nationwide Children’s Hospital Carrier Study. Dr. Kan Hor and Dr. May Ling Mah will discuss cardiac disease in females who are carriers of the Duchenne genetic mutation – what we know, what we do not know, and what we hope to learn.Host:Kathi Kinnett, SVP Clinical Care, Parent Project Muscular DystrophySpeakers:Kan Hor, MD, Nationwide…See More
May 11

Staff
PPMD posted blog posts
May 10
David commented on PPMD's blog post PTC Therapeutics to Discuss Launch Plans for Emflaza™ (Deflazacort) during Community Call on Monday, May 8th at 3:00 PM EDT
"Nothing less than corporate moral bankruptcy"
May 8

Staff
PPMD posted blog posts
May 8

Staff
PPMD updated an event
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PPMD's Every Single [One] Tour: Gainesville, FL at Gainesville, FL

June 3, 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
May 8

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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