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Latest Activity

PPMD posted a blog post

Santhera Shares Duchenne Community Update on SIDEROS Trial

Santhera has provided a community update, including the latest news on their SIDEROS trial, currently recruiting. Click here to view the update.…See More
10 hours ago

PPMD posted a blog post

Sarepta Therapeutics Announces Launch of Route 79, The Duchenne Scholarship Program

Sarepta Therapeutics announced the launch of Route 79, The Duchenne Scholarship Program, an annual scholarship for students diagnosed with Duchenne. The Route 79 program is designed to help students with Duchenne pursue their post-secondary educational goals. Scholarships of up to $10,000 will be awarded to 10 individuals chosen by an independent committee of Duchenne community members based on an applicant’s community involvement and a personal essay. Thanks to Sarepta for this exciting…See More
Sarada Kuchibhotla replied to Sampreet's discussion Calorie needs
"I too was on the look out for a very long time for a good nutritionist for my son  who is non ambulatory plus a vegetarian.You find broad general guidelines about it ( read on the cure duchenne organization ) but you have to work it out with a…"
Mar 17
Sarada Kuchibhotla replied to Sarada Kuchibhotla's discussion breathing issues
"Thank You. my son uses trilogy on bipap settings with humidifier. he used zyrtec and nasal spray .However the sprays don't agree with him as he feels a burning sensation when he uses them. shall check with his pulmonoligst about the mouth…"
Mar 16
Jason Darienzo replied to Sarada Kuchibhotla's discussion breathing issues
"For stuffed nose my brother takes zyrtec and a nasal spray and when really congested zyrtec with decongestant.  Try using try heated humidifier attached to trilogy the cold air could cause inflammation . I use the trilogy 24/7 as a bi-pap at…"
Mar 16
sally baird is now a member of PPMD Community
Mar 16
Sarada Kuchibhotla posted a discussion

breathing issues

My son who is aged 20 years has lot of breathing issues.Although he is on a trilogy unit at night time which has helped him sleep better relatively than before, yet whenever winter sets in or if it is cold or chill outdoors he has either a nose block or throat congestion and if neither, he complains that the mask is not proper and air is not entering his nostrils fully .Hence  he often gets up tired , feels  lightheaded at times , has headaches  which adversely affect his studies. all test have…See More
Mar 16
Margarita Yashchenko shared Annie Kennedy's blog post on Facebook
Mar 15
Margarita Yashchenko commented on Annie Kennedy's blog post Meet the 2018 PPMD Adult Advisory Committee (PAAC)
"I admire of such people. I would like having the same organization in Ukraine. Maybe somebody tell me how I can do it. Help our children. Will write me. My email: my-science@ukr.net.  "
Mar 15

PPMD posted blog posts
Mar 15

Ryan Fischer posted a blog post

ADD YOUR VOICE: Participate in PPMD’s Gene Therapy Survey

Patient-Focused Drug Development in actionCompanies developing gene therapies, the FDA, and other stakeholders are interested in the treatment priorities of the Duchenne community.  Because of this, PPMD has collaborated with RTI International, with financial support from Solid Biosciences and Pfizer, to launch a survey through…See More
Mar 14
Profile Iconmeg, SMITA FIRASTA, Kathleen E Henke and 1 more joined PPMD Community
Mar 14
brian phillip nicholoff favorited Kathi Kinnett's blog post Duchenne Pulmonary Awareness Video Series
Mar 13
Rosanna Ouellette posted photos
Mar 13

Kathi Kinnett posted a blog post

Duchenne Pulmonary Awareness Video Series

Pulmonary management in Duchenne (all of the care involved with breathing and coughing) can be confusing and difficult to understand. There are many terms, abbreviations, and procedures that all sound very complicated. PPMD – with support from Santhera Pharmaceuticals and input from a panel of parents, patients, and pulmonologists – has created a series of…See More
Mar 13
Margarita Yashchenko shared Vee Lail's group on Facebook
Mar 12

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