The Senate is considering another effort to repeal the Affordable Care Act (ACA) before the end of the month. Last week, Senators Lindsey Graham (R-SC), Bill Cassidy (R-LA), Dean Heller (R-NV), and Ron Johnson (R-WI) released a new plan to repeal and replace the ACA. This proposal is commonly referred to as…Continue
Added by Annie Kennedy on September 19, 2017 at 10:00am — No Comments
Everyone, six months of age and older, needs to be vaccinated against influenza (flu) by the end of October, if possible. Protecting people living with Duchenne is especially important. A …Continue
Added by Kathi Kinnett on September 18, 2017 at 10:30am — No Comments
Santhera Pharmaceuticals announced that the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) has adopted a negative opinion for its Type II extension application for Raxone® (idebenone) in Duchenne. Santhera plans to appeal the opinion and will seek a re-examination by the CHMP. We appreciate…Continue
Added by PPMD on September 15, 2017 at 8:00am — No Comments
Today Parent Project Muscular Dystrophy (PPMD) named Nemours/Alfred I duPont Hospital for Children (Nemours) in Wilmington, Delaware our 17th Certified Duchenne Care Center.
PPMD’s Certified Duchenne Care Center Program,…Continue
Added by PPMD on September 14, 2017 at 8:30pm — No Comments
There are some days when I feel like our community is in its infancy. When I look at where we are in terms of access, therapeutic options, combinations, care implementation…
But more often than not, I am overwhelmed with gratitude for the infrastructure and resources…
Added by Annie Kennedy on September 13, 2017 at 5:00pm — No Comments
We kicked off our fall Every Single One Tour stops in West Virginia this past weekend! We appreciate all of the families, speakers, and volunteers that spent the day with us in…Continue
Added by Kathi Kinnett on September 13, 2017 at 4:30pm — No Comments
Paperwork – oh the paperwork!
Each time you visit a physician’s office or hospital, we leave with piles of forms and papers detailing the visit. The providers seen, the prescriptions written, results from tests conducted, instructions for follow up, and more. And each of those pieces of…Continue
Added by Annie Kennedy on September 13, 2017 at 10:00am — No Comments
The deadline to submit a written comment for the FDA Advisory Committee Meeting on ataluren is this upcoming Thursday, September 14th.
To make a…Continue
Added by PPMD on September 12, 2017 at 9:30am — No Comments
The dynamics of weight loss are intriguing, in take a look at the many because they came from desire to shed some weight in comparison to the small number who do. You would think with all the diet plans and dietary supplements, that weight problems would go away. But that hasn't came about, so something must be wrong. The sheer number of programs and products out there helps it to be difficult to find out what is effective and what is not. And it is far from as if one solution is effective…Continue
Added by Louie Lewis on September 11, 2017 at 9:56am — No Comments
PPMD is excited to announce next year’s lineup of areas we will visit as part of our End Duchenne Tour!
Combining each of the pillars that make up PPMD’s mission, the End Duchenne Tour brings updates on research, advocacy, and care to cities across the…
Added by PPMD on September 8, 2017 at 5:36pm — No Comments
Added by PPMD on September 6, 2017 at 10:00am — No Comments
Earlier this year, Bristol-Myers Squibb (BMS) announced it had entered into an agreement to license BMS-986089 (RG6206), an anti-myostatin adnectin in development for Duchenne muscular dystrophy, to Roche. Today, the Roche team has…Continue
Added by PPMD on September 5, 2017 at 9:30am — No Comments