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No Exon Left Behind
Posted by Sharon Hesterlee on July 21, 2014 at 10:15am 6 Comments 0 Favorites
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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Discussions
idebenone and dark urine
Started by Dalibor Randjelovic in Supplements. Last reply by Nadja 19 hours ago. 3 Replies 0 Favorites
Does Idebenone have something to do with behaviours and cognitive issues?
Started by Moein in Research. Last reply by Rahul Deshpande on Wednesday. 10 Replies 0 Favorites
White House Petition Response: Drug Approval Pathways and Duchenne Muscular Dystrophy
Started by Jason Darienzo in Research on Wednesday. 0 Replies 0 Favorites
BRUNO LIFT, LOWERING SEAT
Started by Luis Cordero in Accessibility and Disability Issues on Monday. 0 Replies 0 Favorites
DMD Exon 44 Deletion
Started by MEHMET ASIK in General Discussion. Last reply by MEHMET ASIK on Monday. 3 Replies 0 Favorites
Latest Activity
StaffPPMD posted an event
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
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"
Parent Project Muscular Dystrophy via Facebook
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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StaffPPMD 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
Jaffer Raza favorited PPMD's blog post Cincinnati Children’s Named Certified Duchenne Care Center By Parent Project Muscular Dystrophy
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…"
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"
Dalibor Randjelovic posted a discussionidebenone 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
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
"
Jason Darienzo posted a discussionWhite House Petition Response: Drug Approval Pathways and Duchenne Muscular Dystrophy
https://petitions.whitehouse.gov/response/drug-approval-pathways-and-duchenne-muscular-dystrophy?utm_source=wethepeople&utm_medium=email&utm_content=duchenne-responseOFFICIAL FOOD AND DRUG ADMINISTRATION RESPONSE TOUrge the FDA to Say YES to Accelerated Approval for safe, effective…See More
Parent Project Muscular Dystrophy via Facebook
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…
See MoreStaffPPMD 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
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…"
Parent Project Muscular Dystrophy via Facebook
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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