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Recapping the FDA-NIH Dystrophin Methodology Workshop

Posted by John D. Porter, PhD on March 21, 2015 at 10:30am 5 Comments

I always felt a strong connection to the Duchenne community while working at the NIH. As you know, that connection and the incredible work of organizations like PPMD inspired me to jump full-time into the fight to end Duchenne.

Yesterday’s FDA and NIH dystrophin methodology workshop really…

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Our young adults

Started by Jeanette Lindblad in Social Issues. Last reply by tracie 16 hours ago. 6 Replies

Deletion of Exon 50

Started by Tulika in Research. Last reply by Corinne King yesterday. 4 Replies

Deflazacort Recall

Started by Dakota Ferrazzi in Research on Thursday. 0 Replies

IEP in state of Maryland

Started by Debby Meyers McGee in Education. Last reply by Annie Kennedy on Thursday. 1 Reply

Latest Activity

Shelly commented on John D. Porter, PhD's blog post Recapping the FDA-NIH Dystrophin Methodology Workshop
"All the beseeching eyes of all the parents globally are on FDA'S APPROVAL OF ETEPLIRSEN . The only hope for dmd community is approval of one such drug which is gonna affect the processing of.other potential drugs amenable to other deletions…"
5 hours ago
Richard Darienzo commented on John D. Porter, PhD's blog post Recapping the FDA-NIH Dystrophin Methodology Workshop
"While this recent meeting between the NIH and the FDA certainly increases Duchenne's visibility within the main stream medical community,  it represents some disturbing…"
8 hours ago
Alpa Shah favorited PPMD's blog post What is Epicatechin?
10 hours ago
tracie replied to Jeanette Lindblad's discussion Our young adults
"My son is 26 and just mentioned to me last night that he wishes he wasn't such a "homebody." He said he realized he doesn't have any friends, but the effort to go out and try to meet people is intimidating. On my side of the…"
16 hours ago
Shelly commented on John D. Porter, PhD's blog post Recapping the FDA-NIH Dystrophin Methodology Workshop
"I believe that PPMD'S efforts will definitely end duchenne one day!!!!!!! The therapeutic-driven dystrophin increase in dysyrophin is gonna benefit combine the therapies and find a cure for dmd...."
yesterday
Profile IconParent Project Muscular Dystrophy via Facebook
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For the remainder of March and the month of April, DuchenneConnect is focusing on questions brought to us by researchers working in the Duchenne and Becker field. The first new module for the spring is the GI/GU Module, which focuses on gastrointestinal and urinary function, including eating, swallowing, bowel movements, and urination. It should only take about 10 minutes to complete. The other new module for the spring is the Researcher Questions Module, which is a small set of questions…

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Corinne King replied to Tulika's discussion Deletion of Exon 50
"Hi there, my sons have a deletion of Exon 50 also. I also would love for them to be on the trial for Prosensa, but we are in NZ. I am looking into it though. Exon skipping should help our boys, its actually what keeps me going. I started a group on…"
yesterday
Dakota Ferrazzi replied to jiasusa5's discussion Deflazacort 30 mg batch J021 and batch J028 recall email.
"i have J022 and I'm scared to take it need to talk to the people from masters before i take it again  … luckily i have 2 boxes from a old order J011"
Thursday
Dakota Ferrazzi posted a discussion

Deflazacort Recall

i heard there is a recall for J021 and J028….i have boxes that say J022 now I'm scared to take them.See More
Thursday
Tammy Henegar is attending PPMD's event
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Webinar: Orthopedic Complications in Duchenne (Contractures, Scoliosis, & Fractures) at Online Webinar - Eastern Time Zone

March 31, 2015 from 1pm to 2pm
Tuesday, March 31st, 1:00-2:00 EDT"What is heel cord lengthening?" "What are AFO's?" "How do I know if I am correctly doing stretches with my child?" "What should I know about scoliosis surgery?" "My child hates "night boots" – are they really that important?"These and so many other questions are asked regularly around orthopedic complications in Duchenne. To address the issues of contractures, scoliosis, and fractures, we have elicited the assistance of three experts:Dr. Susan Apkon, Seattle…See More
Thursday
Profile IconParent Project Muscular Dystrophy via Facebook
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Webinar: Orthopedic Complications in Duchenne (Contractures, Scoliosis, & Fractures)

Webinar: Orthopedic Complications in Duchenne (Contractures, Scoliosis, & Fractures)

Tuesday, March 31st, 1:00-2:00 EDT "What is heel cord lengthening?" "What are AFO's?" "How do I know if I am correctly doing stretches with my child?" "What should I know about scoliosis surgery?" "My child…

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FacebookThursday · Reply

Staff
Annie Kennedy replied to Debby Meyers McGee's discussion IEP in state of Maryland
"What county are you living in? I spent a decade helping families navigate the school systems in Maryland, DC, and VA and some counties were much easier to work with than others... In the state of Maryland, children with Duchenne (especially…"
Thursday
Profile IconJonathan Gray, marne iwand and James Nickas joined PPMD Community
Thursday
Profile IconParent Project Muscular Dystrophy via Facebook
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The archived webcast of Friday’s FDA-NIH dystrophin methodology meeting is now available online: http://www.fda.gov/drugs/newsevents/ucm432429.htm

Recapping the FDA-NIH Dystrophin Methodology Workshop

community.parentprojectmd.org

I always felt a strong connection to the Duchenne community while working at the NIH. As you know, that connection and…

See More
FacebookThursday · Reply

Staff
PPMD updated an event
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Webinar: Orthopedic Complications in Duchenne (contractures, scoliosis, & fractures) at Online Webinar - Eastern Time Zone

March 31, 2015 from 1pm to 2pm
Tuesday, March 31st, 1:00-2:00 EDT"What is heel cord lengthening?" "What are AFO's?" "How do I know if I am correctly doing stretches with my child?" "What should I know about scoliosis surgery?" "My child hates "night boots" – are they really that important?"These and so many other questions are asked regularly around orthopedic complications in Duchenne. To address the issues of contractures, scoliosis, and fractures, we have elicited the assistance of three experts:Dr. Susan Apkon, Seattle…See More
Wednesday
Debby Meyers McGee posted a discussion

IEP in state of Maryland

We are having lots of issues keeping an IEP we have from NY in MD for our son as he does not have cognitive issues but he needs PT and OT.  They want to take away IEP.  Wanted to see if anyone has experience with an IEP in Maryland or if anyone has a 504 with PT and OT in MD.  Son is 5 years old and in kindergarten.  We moved to NY in August prior to kindergarten and has been a fight since then. thanks. See More
Wednesday
 
 
 

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