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Featured Blog

PPMD’s DuchenneConnect to Receive $1.4 Million Funding Award from PCORI

Posted by Ann Lucas on August 12, 2015 at 12:04pm 0 Comments

(pictured: DuchenneConnect's Family Advisors at PPMD's 2015 Connect Conference)



DuchenneConnect
, led by PPMD, has been approved for…

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Latest Activity

Eddy Rivera replied to Eddy Rivera's discussion Support with advice to help my son with deletion of exon 58?
"Donna Goodnight, thank you my wife and me that you took the time to answer our request. We would like that we could help, as parents we are still quite devastated by the news, after 9 months we've been in some way the stage of…"
3 hours ago
Peter Renzi is now a member of PPMD Community
5 hours ago
David replied to wainaina muiruri's discussion Grieving
"I'm so sorry, Wainaina"
9 hours ago
David replied to wainaina muiruri's discussion Grieving
"They who stand with breaking hearts around this little grave, need have no fear. The larger and nobler faith in all that is, and is to be, tells us that death, even at its worst, is only perfect rest...the dead do not suffer."
9 hours ago
Profile IconParent Project Muscular Dystrophy via Facebook
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Don't forget to join us for our webinar today at 1 PM EDT to learn more about Ad Comms — what they are are, the purpose they serve, where they fit into the regulatory decision making process, and how we, as the primary stakeholders in the Duchenne community, can be most effective during this process. Guests will include FDA staff.

Webinar: What is an Ad Comm?

Webinar: What is an Ad Comm?

PPMD will…

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Facebook17 hours ago · Reply
Donna replied to Eddy Rivera's discussion Support with advice to help my son with deletion of exon 58?
"Hello Eddy, my son Kyle also has deletion of exon 58. You are the first one I have found with the same deletion!!! We are from Ilinois in the United States and doctor with Dr. Katherine Matthews at the University of Iowa Children's Hospital in…"
yesterday
Profile IconParent Project Muscular Dystrophy via Facebook
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It's September! This month we will have two fantastic opportunities to share our stories and raise Duchenne awareness on a global scale. Please take a few minutes this month to help us raise awareness on both World Duchenne Awareness Day (9/7) and Coach to Cure MD (9/26). We need your help to tell our story. We need your help to #EndDuchenne! -- On September 7, join us in an international effort to raise awareness with the 2nd Annual World Duchenne Awareness Day. There are numerous…

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Facebookyesterday · Reply
Eddy Rivera posted a discussion

Support with advice to help my son with deletion of exon 58?

Good evening everyone, I would appreciate if you can guide me with your comments and recommendations to help to the best of my son who is 7 years old, because in November last year was diagnosed with DMD, and recently through the test of MLPA , was diagnosed with deletion of exon 58, it would be nice to get your help, which I'll be forever grateful. If I can send e-mail addresses, names of doctors, hospitals or any person or institution that can get an answer for my son, please regaleme 2…See More
Tuesday

Staff
PPMD updated an event
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Train the Trainers: Florida at Gainesville, FL

October 23, 2015 to October 24, 2015
PPMD is providing a 2-day Physical Therapy workshop in Gainesville, FL for patients, parents, and therapists. The workshop will consist of:Day 1 will provide education, training, and hands-on experience for physical therapists. CEUs will be provided.Day 2 will provide education, training, and hands-on experience for patients and parents, as well as therapists interested in participating in both days.----------------View the Agenda & Register:…See More
Monday
Profile IconDeanne Liska, Todd Kronshage and Jennifer Roan joined PPMD Community
Monday
Profile IconParent Project Muscular Dystrophy via Facebook
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We are just one week away from World Duchenne Awareness Day on September 7th! There are a variety of ways you can get involved with this international effort – how will you raise awareness in your community? Find out some easy and effective ways you can help make September 7th a huge success!

One week away from World Duchenne Awareness…

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FacebookMonday · Reply
Leresa replied to Ann Rose's discussion Pain in DMD? How to know his limits?
"My son is seven. He too often complains about the pain mostly in legs sometimes in his shoulders. From my understanding the pain is caused by the contraction of the muscles. The pain usually occurs after he's done had a very active day. LikePT…"
Monday
Trinh Nguyen replied to wainaina muiruri's discussion Grieving
"Dear Wainaina, My heart's with you and your family. Rest in peace, Kamau Wainaina."
Monday
jiasusa5 posted a discussion

7 weeks pregnant and 2 sons with DMD

Hi,I have 4 sons ,2 with DMD and 2 without DMD.I am a carrier and am pregnant again though I was on birth control. I am confused to carry or terminate the pregnancy as If God is giving me baby even on birth control,there will be some reason.I have few questions may be someone help.If I go with CVS ,would this test only tell about DMD or all types of MD?In CVS would we be able to find if its a girl or a boy?for the reason girl can be a carrier.Can girl be tested if she is a carrier or not?ThanksSee More
Sunday
jiasusa5 replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?
"Hi, My son Fozaan is 10 yrs old.He is been on daflazacort for 1 year,he is walking right now.Reading your post give me some hope that there are possibilities. Can you share your advice /experience here like how many times in a day you…"
Sunday
jiasusa5 replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?
"Hi, My son Fozaan is 10 yrs old.He is been on daflazacort for 1 year,he is walking right now.Reading your post give me some hope that there are possibilities. Can you share your advice /experience here like how many times in a day you…"
Sunday
 
 
 

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