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No Exon Left Behind

Posted by Sharon Hesterlee on July 21, 2014 at 10:15am 6 Comments

I'm often asked by parents to explain exon skipping. In fact, at last month's 20th Annual Connect Conference, after we announced a grant awarded to Dr. Judith van…

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Profile IconSameeksha Thakue and Kyra Gray joined PPMD Community
15 hours ago

Staff
PPMD posted an event
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2015 Advocacy Conference at Washington, D.C.

February 22, 2015 to February 24, 2015
Save the date! Details for registration coming soon.The Parent Project Muscular Dystrophy (PPMD) Advocacy Conference, held in the first quarter of each year, is the only officially organized gathering on Capitol Hill for the Duchenne community. Each year, participation at the PPMD Advocacy Conference grows. Scheduled visits on Capitol Hill are arranged for all attendees, giving a face and a voice to PPMD’s advocacy agenda.Please do not hesitate to contact our Director of Community Outreach…See More
16 hours ago
Nadja replied to Dalibor Randjelovic's discussion idebenone and dark urine
"Hi!can you speak German? At monday i am in have an appointment in the biggest neurologist clinic in Germany,and i will ASK them your question.then i can write you what they say.how is your son doing?max was four in may!best wishes Nadja"
19 hours ago
Profile IconParent Project Muscular Dystrophy via Facebook
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In the wake of promising exon-skipping trial announcements earlier this summer, PPMD has been fielding many questions from the community about upcoming trials. We reached out to both Sarepta and Prosensa for updates to share.

Exon-Skipping Trial Updates from Sarepta & Prosensa

community.parentprojectmd.org

In the wake of promising exon-skipping trial…

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Facebook19 hours ago · Reply

Staff
PPMD posted a blog post

Exon-Skipping Trial Updates from Sarepta & Prosensa

In the wake of promising exon-skipping trial announcements earlier this summer, PPMD has been fielding many questions from the community about upcoming trials. We reached out to both Sarepta and Prosensa for updates to share.Sarepta UpdateSarepta tells us they will provide the Duchenne patient community with a written…See More
20 hours ago
Jaffer Raza favorited PPMD's blog post Cincinnati Children’s Named Certified Duchenne Care Center By Parent Project Muscular Dystrophy
21 hours ago
Dalibor Randjelovic replied to Dalibor Randjelovic's discussion idebenone and dark urine
"Thanks for reply. I am giving him mixed with yogurt in the morning (open the capsules and put in yogurt with a little honey, it looks like icecream). Dark urin becomes with increasing dose of idebenone. After my doubt on this I tested him twice for…"
yesterday
Nadja replied to Dalibor Randjelovic's discussion idebenone and dark urine
"Hi marija,our son takes idebenone since 8 weeks,300mg per day.at the first times the urin was sometimes very dark,but now and the Last time it was normal.how do you give hin the idebenone?nadja"
yesterday
Dalibor Randjelovic posted a discussion

idebenone and dark urine

Hi, in last one month we notice that is urine of our 3,5 yr.old son becomes darker. First we checked urine infections and that is ok. We could not check myoglobinuria because our local laboratoria do  not  testing . Our doc suggested us to slow down with activities and to drinking much water. We do  it, but his urine is still dark ( with  brown and red pigment). In that period we are switching  him from 150 to 300mg of idebenone ( which we are giving him from his 2 y). We did one test, we…See More
Wednesday
Rahul Deshpande replied to Moein's discussion Does Idebenone have something to do with behaviours and cognitive issues?
"Thanks Keith & Jill. Pl let me know the specific medicines with the dosage after the blood test. My email id is rahulpdeshpande26@gmail.com  "
Wednesday
Jason Darienzo posted a discussion
Wednesday
Profile IconParent Project Muscular Dystrophy via Facebook
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Congratulations to Cincinnati Children's Hospital Medical Center on becoming a Certified Duchenne Care Center! Dr. Brenda Wong and team have touched the lives of so many families in this community and are a leader in comprehensive care. Thank you for your hard work!

Cincinnati Children’s Named Certified Duchenne Care Center By Parent Project Muscular Dystrophy

community.parentprojectmd.org

Cincinnati Children’s Hospital…

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FacebookTuesday · Reply

Staff
PPMD posted a blog post

Cincinnati Children’s Named Certified Duchenne Care Center By Parent Project Muscular Dystrophy

Cincinnati Children’s Hospital Medical Center has been named the third Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD). PPMD established certified centers to create a network capable of providing the highest standards in clinical and sub-specialty services, applying new…See More
Tuesday
Profile IconMel DeLlanos, Lalit Raghuvanshi and Jake Lancaster joined PPMD Community
Tuesday
Keith & Jill VE replied to Moein's discussion Does Idebenone have something to do with behaviours and cognitive issues?
"Hi Rahul, Our son is currently on deflazacort, idebenone and several supplements (calcium, vitamin D, omega, multivitamin).  However, we're waiting for the results of his recent blood tests to re-evaluate all of them.  I would be…"
Tuesday
Profile IconParent Project Muscular Dystrophy via Facebook
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BREAKING NEWS: Houses Passes MD-CARE Act Amendments! The House of Representatives today approved the landmark MD-CARE Act so the law can continue getting results for all patients impacted by Duchenne and other forms of muscular dystrophy. The House approved the bill, H.R. 594, sponsored by Congressman Dr. Michael Burgess of Texas and Eliot Engel of New York, by unanimous voice vote. With this bill, we will ensure the MD-CARE Act keeps pace with the scientific and clinical needs of today…

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