All Blog Posts Tagged 'PPMD Blog' (819)

A Strong Start to 2013

Thanks to everyone who contributed so generously to PPMD’s holiday appeal we have been able to fund three new projects designed to speed the progress of the clinical trials underway in Duchenne. As many…

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Added by Sharon Hesterlee on February 4, 2013 at 2:30pm — No Comments


Staff
PPMD Funds Collection and Analysis of Imaging Data from Eteplirsen Study

Parent Project Muscular Dystrophy (PPMD) announced that it has funded $59,000 to Krista Vandenborne, PhD  of the University of Florida in Gainesville to test the ability of magnetic resonance imaging  (MRI) to detect changes in the muscles of  those living with …

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Added by PPMD on February 4, 2013 at 8:30am — No Comments


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Living Duchenne: I Love the Internet

Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, Living Duchenne.



Living Duchenne: I Love the Internet 

 

Dear Internet, how I do love thee!…

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Added by PPMD on January 31, 2013 at 8:32pm — 2 Comments


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Webinar Q&A: Ventricular assist device (VAD) use in Duchenne

On January 24, PPMD hosted the third in our series of four cardiac webinars. This webinar was dedicated to the subject of Ventricular assist device (VAD) use in patients with Duchenne. We were pleased to be joined by a panel of four outstanding surgeons who are all experts in the field of cardiothoracic surgery.

The four…

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Added by Kathi Kinnett on January 30, 2013 at 12:30pm — No Comments


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Is Your District Represented?

As you know, we head into an important year of Advocacy with the muscular dystrophy community determined to Reauthorize the MD-CARE Act. For the past few months PPMD, FED, and MDA have been working…

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Added by Ryan Fischer on January 28, 2013 at 4:30pm — No Comments

Sarepta Summary of Outstanding Questions from PPMD Webinar

On October 23, 2012, PPMD hosted a webinar with Sarepta to discuss of the 48 Week dystrophin and 6-minute walk test (6MWT) data from the Phase IIb extension study in Duchenne as well as next steps for the eteplirsen program. Chris Garabedian, President and CEO of Sarepta…

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Added by Sharon Hesterlee on January 17, 2013 at 12:00pm — No Comments

American Taxpayer Relief Act of 2012

Although it’s a New Year, there is still an opportunity to make a charitable donation for the 2012 tax year. The American Taxpayer Relief Act of 2012 that averted the fiscal cliff and maintains incentives for charitable giving for most Americans affects charitable giving in several ways; some still to be determined and we will keep you apprised of any developments for 2013 giving.



One important piece we need to make you aware of now is the return of the IRA charitable…

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Added by Mary G. Connolly on January 16, 2013 at 1:50pm — No Comments


Staff
Ventricular Assist Device (VAD) use in patients with Duchenne

End stage dilated cardiomyopathy (DCM) is a known complication of Duchenne muscular dystrophy. DCM leads to end stage heart failure and the premature death of patients with Duchenne. Given recent advances in respiratory care, heart failure is the cause of death in more than 40% of patients with Duchenne.

 

A “ventricular assist device (VAD)” is a mechanical pump that is connected to the heart in order to support its function. The type of device that would be considered in…

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Added by Kathi Kinnett on January 16, 2013 at 1:30pm — No Comments


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My Voice: Anthony DeVergillo, 19 years old

When you meet Anthony DeVergillo in person, you can’t help but leave the conversation with a smile on your face. This almost 20-year-old is the definition of optimism. In fact, he has made spreading optimism his life’s work. From an early age, Anthony realized he had two choices with his Duchenne diagnosis…

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Added by Will Nolan on January 16, 2013 at 1:00pm — No Comments


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Your Go-to Duchenne News Resource

The Duchenne community is bigger than ever and Duchenne news is coming faster and more frequently than we could ever have hoped for. 2013 is already promising to be a big year in research, advocacy, care, and raising awareness. But…this can be overwhelming. With so much information coming your way, with a barrage of messages and posts through social media in your face, it’s hard to know what’s legit, what’s truly promising, and unfortunately, what just isn’t true.…

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Added by Will Nolan on January 16, 2013 at 1:00pm — No Comments


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GSK Update

Update from GSK on the progress of their drisapersen (previously GSK2402968) clinical development program:

To keep you current on the progress of the drisapersen (previously GSK2402968) clinical development program, as you have requested, I am writing to inform you that the last patient has been recruited within the drisapersen US Phase II clinical study […

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Added by PPMD on January 10, 2013 at 9:00pm — No Comments

Educating healthcare providers about the need for early diagnosis

Families of children with muscular dystrophy and other muscle disorders often experience a diagnostic odyssey that is too long and too emotionally difficult. PPMD, with support from The Centers for Disease Control and Prevention (CDC), created the National Task Force for Early Identification of Childhood Neuromuscular Disorders to address the continued gap between the time when the first symptoms of muscle weakness…

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Added by Holly Peay on January 9, 2013 at 2:00pm — 1 Comment


Staff
Living Duchenne: My Year in Review

 

Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, Living Duchenne.



Living Duchenne: My…

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Added by PPMD on January 7, 2013 at 10:30am — No Comments


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My Voice: Mohammed Haider, 23 years old

You recognize the face and the name from this year’s holiday campaign – college graduate, working on his Master’s degree, funny. But who is Mohammed “Mo” Haider? What’s his story? This month…

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Added by Will Nolan on December 17, 2012 at 1:55pm — No Comments


Staff
End Duchenne Gala: 12.6.12

On December 6, 2012, PPMD held its inaugural End Duchenne Gala in New York City. It was a truly remarkable evening thanks in large part to the organizing committee (Catherine Collins, Anessa Fehsenfeld, Janelle Hester, Vicki Singh, and Paula Zenobio) and a room full of compassionate, generous…

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Added by PPMD on December 13, 2012 at 4:30pm — No Comments


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Exon Skipping & Improving Industry Communications

The 194th workshop of the European Neuro Muscular Centre (ENMC) met in Naarden, The Netherlands, December 7-9, 2012. The title of the workshop was, “Towards Clinical Application of Antisense-mediated Exon Skipping for Duchenne Muscular Dystrophy – Opportunities and Challenges.”  25 representatives of…

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Added by Kathi Kinnett on December 13, 2012 at 12:30pm — No Comments


Staff
The Greatest of These

Photo Credit

 …

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Added by Pat Furlong on December 13, 2012 at 10:30am — No Comments


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Webinar Q&A: Cardiac Interventions

Parent Project Muscular Dystrophy recently hosted the second part of our Cardiac Webinar Seriers with Dr. Larry Markham (Children’s Hospital Vanderbilt, Vanderbilt, TN) and Dr. J. Lynn Jefferies (Cincinnati Children's Hosptial, Cincinnati, OH) to discuss cardiac…

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Added by Kathi Kinnett on December 5, 2012 at 4:30pm — No Comments

Developing a Risk Tolerance Study for FDA

We, the Duchenne community, have entered into a new era where more trials are coming online and the possibility of treatments becoming a reality. PPMD remains focused on working with the FDA to inform them about Duchenne so they can better understand the complexities of the disease and its patient population.



We have been working hard to create a survey about perceptions of benefits and risk tolerance of parents/guardians of individuals with Duchenne,…

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Added by Holly Peay on November 21, 2012 at 10:37am — No Comments

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