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A Life in Transition

Started by Maria Salamon in Social Issues. Last reply by Kim S 18 hours ago. 1 Reply

Exon 50 deletion

Started by Corinne King in General Discussion yesterday. 0 Replies

Idebenone

Started by Nadja in Research. Last reply by Rahul Deshpande on Monday. 3 Replies

Latest Activity

Profile IconParent Project Muscular Dystrophy via Facebook
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The recording of our Dystrophin 101 webinar is now available. Learn more about the basic biology of dystrophin, how dystrophin is measured in both preclinical studies and clinical trials, and the need for and role that dystrophin analysis play in clinical trials of novel agents designed to exert their therapeutic effects through an increase in dystrophin levels. Our speakers also discussed what is required in order to have dystrophin considered as a surrogate.…

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Facebook1 hour ago · Reply
Carol Keskeny commented on Gisel Rivero's group Grief and Loss
"Oh my goodness, Kimberly.  I can not imagine your pain.  My son is also 28.  I know when he was trached 3 years ago and had no voice, I cried everyday for a year but I still have him.  I would be happy to give you my email…"
5 hours ago

Staff
Kathi Kinnett commented on Kathi Kinnett's blog post Important New Duchenne Steroid Protocol: Download the "PJ Nicholoff Steroid Protocol"
"Lynne- there are guidelines for people taking twice weekly/weekend doses of steroids included in the protocol. Because 10 days on/10 days off is not a dosing schedule that is frequently used in the US, those guidelines have not been included. I…"
5 hours ago
Kimberly Lamon commented on Gisel Rivero's group Grief and Loss
"I lost my son Michael to DMD on Jan 19, 2015. I miss him so much I cared for him for 28 years and now I am a loss as to what to do now."
5 hours ago
Kimberly Lamon joined Gisel Rivero's group
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Grief and Loss

For any parent that needs to discuss those fellings of grief and loss
5 hours ago

Staff
Brian Denger commented on Annie Kennedy's blog post We Need YOU to Help Us With the Development of the Solid Suit
"Hello All,We've learned some people are having trouble completing the survey.  Apparently one feature is not working properly in certain web browsers (Browsers include Internet Explorer, Firefox and Google Chrome).   If you…"
5 hours ago
Shelly commented on Annie Kennedy's blog post The Solid Suit: Combining Forces to Enhance Strength
"I strongly recommend every one to participate and take up the survey. All the best to ppmd and solid suit team."
15 hours ago
David commented on Kathi Kinnett's blog post Important New Duchenne Steroid Protocol: Download the "PJ Nicholoff Steroid Protocol"
"The Deflazacort situation makes this yet harder. I have very limited supply options and sometimes they just POOF disappear in the mail. What then? Taper and pray is what. Damn FDA."
18 hours ago
Kim S replied to Maria Salamon's discussion A Life in Transition
"Dear Maria, My heart goes out to you for your loss and all your pain. My 13 year old son also has Duchenne's and we too have experienced a great range of emotions. What has brought us comfort is having clear concrete answers to the very…"
18 hours ago
Kai Mjaanes might attend PPMD's event
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Dystrophin 101: Everything You Always Wanted to Know About the Duchenne Protein (And Were Not Afraid to Ask) at Online Webinar - Eastern Time Zone

March 3, 2015 from 1pm to 2pm
March 3, 2015 from 1pm to 2pm ETThis webinar will review the basic biology of dystrophin (the gene, structure-function of the protein, its role in the dystrophin-glycoprotein complex, characteristics of different forms of dystrophin (both naturally occurring and drug-induced truncated forms), discuss how dystrophin is measured in both preclinical studies and clinical trials, and discuss the need for and role that dystrophin analysis play in clinical trials of novel agents designed to exert…See More
23 hours ago
Profile Iconcarrie, Carolyn Schmiedel, Prakash and another member are attending PPMD's event
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Dystrophin 101: Everything You Always Wanted to Know About the Duchenne Protein (And Were Not Afraid to Ask) at Online Webinar - Eastern Time Zone

March 3, 2015 from 1pm to 2pm
March 3, 2015 from 1pm to 2pm ETThis webinar will review the basic biology of dystrophin (the gene, structure-function of the protein, its role in the dystrophin-glycoprotein complex, characteristics of different forms of dystrophin (both naturally occurring and drug-induced truncated forms), discuss how dystrophin is measured in both preclinical studies and clinical trials, and discuss the need for and role that dystrophin analysis play in clinical trials of novel agents designed to exert…See More
yesterday
Profile IconJay Charleston and Janis Kitsuwa-Lowe joined PPMD Community
yesterday
Profile IconParent Project Muscular Dystrophy via Facebook
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Thank you to Olympic champion Ryan Lochte for supporting our fight to #EndDuchenne on #GiveRARE Day! Support the movement today and 100% of your donation will go to RESEARCH: http://giverare.razoo.com/story/Parentprojectmd

Facebookyesterday · Reply
Profile IconParent Project Muscular Dystrophy via Facebook
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Tuesday, March 3 at 1:00pm - 2:00pm EST: Our "Dystrophin 101" webinar will review the basic biology of dystrophin (the gene, structure-function of the protein, its role in the dystrophin-glycoprotein complex, characteristics of different forms of dystrophin (both naturally occurring and drug-induced truncated forms), discuss how dystrophin is measured in both preclinical studies and clinical trials, and discuss the need for and role that dystrophin analysis play in clinical trials…

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Profile IconParent Project Muscular Dystrophy via Facebook
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PTC Therapeutics today announced that it will make Translarna available for siblings of patients in certain open label PTC clinical trials for nonsense mutation Duchenne in advance of commercial availability in their regions. “Families of children with Duchenne have wanted companies to be responsive in the case of siblings. With this program, PTC, once again, demonstrates itself as a champion for the Duchenne community.” -- Pat Furlong, Founding President of PPMD…

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Profile IconParent Project Muscular Dystrophy via Facebook
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PPMD is honored to join dozens of foundations participating in the first-ever Give RARE Day on March 3. Give RARE is a single day for the world to give to RARE disease. Although each disease is rare, in total 30 million Americans are affected by a RARE disease. None of us chose to be part of the RARE disease community, but here we are. And the Duchenne community is being looked at as a leader. Let’s show them what we can do as a community when we give. 100% of your donation will go to…

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