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All Blog Posts Tagged 'PPMD Blog' (686)


Staff
My Voice: Jonathan Piacentino, 18 years old

Our Featured Voice for February 2012 is 18-year-old Jonathan Piacentino, a second semester freshman at Nazareth College. PPMD’s Advocacy Conference, held in the first quarter of each…

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Added by Will Nolan on February 3, 2012 at 4:00pm — No Comments


Staff
Newborn screening for Duchenne muscular dystrophy

Guest blog by Kathi Kinnett RN/CNP

 

Currently there is no newborn screening for Duchenne in the United States. However, groundbreaking work from Jerry Mendell’s lab at The Ohio State University may have a hand in changing this.

 

Mendell’s recent pilot study was funded by the Centers for Disease Control (CDC) and…

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Added by PPMD on February 2, 2012 at 10:00am — 1 Comment


Staff
Interview Study Recruiting: PTC ataluren trial placebo group

Was your son in the placebo group in the PTC ataluren trial?

 

PPMD has partnered with researchers at the National Institutes of Health (NIH) for an interview study. The purpose of this study is to describe the experiences of people involved in phase II clinical trials of ataluren for Duchenne muscular dystrophy. We are interested in learning about motivations for being in the clinical trial, expectations of the trial, the experience of the trial, and interactions between families…

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Added by PPMD on February 1, 2012 at 2:00pm — No Comments


Staff
Webkinz supports the fight to end Duchenne!

PPMD is proud to be chosen by the Webkinz Foundation as a featured charity, which includes a donation from the Caring Valley! (Read the Release)

 

Webkinz is a great toy brand that your kids probably already love. And for the month of February, you can purchase…

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Added by Will Nolan on February 1, 2012 at 10:00am — No Comments


Staff
Internal Monologue

Conquer the Canyon?  Really?  What are you thinking?

Seems like a long time ago, Kimberly and I went to the Starting point of the Disney Marathon. I had no idea what to expect, having never watched a marathon and absolutely no desire to run a city block let alone 26.2 miles. One mom had called Kimberly to talk…

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Added by Pat Furlong on January 30, 2012 at 2:30pm — No Comments


Staff
Respecting Our Elders

PPMD President Pat Furlong and Colorado FACES Coordinator Ivy Scherbarth co-blog about the older patients in the Duchenne community, and what we can learn from the journeys they have been on.  They are the real Duchenne experts. We hope that after you read these entries, you'll post your own thoughts on the topic.



Listen & Learn…

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Added by Pat Furlong on January 9, 2012 at 10:04am — 8 Comments


Staff
Advocacy: Get Active!

With deficit reduction remaining a top priority in Congress and a $1.2 trillion spending reduction on the horizon, 2012 will be a critical year to protect Duchenne research and public health priorities. For this to happen, we need your voice on Capitol Hill now more than ever before. Whether that be by joining us in Washington at the Annual Advocacy Conference or advocating from home by contacting…

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Added by Ryan Fischer on January 5, 2012 at 2:00pm — No Comments


Staff
Resolutions for 2012

I wanted to share with you a few of my resolutions for 2012...mainly goals for PPMD and the Duchenne community, but also a couple of personal reflections. 2011 was an incredible year for Duchenne. We made great strides in research, care, advocacy, and in raising awareness. But there is still so much I want to tackle...we all want to tackle.

 

Read over my resolutions and then please take a moment to share some of your own. This time next year, we can all check back and see…

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Added by Pat Furlong on January 3, 2012 at 2:30pm — 5 Comments


Staff
My Voice: Sam Hersom, 10 years old

This year, for the first time, we will have a Run For Our Sons team participating in Disney’s 5K race, which allows runners to push someone in a wheelchair or stroller. Sam’s mom, Kris a first time runner, told us that the whole family will be participating this year.

“This whole experience of…

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Added by Will Nolan on January 1, 2012 at 3:30pm — No Comments


Staff
AVI's Duchenne Program

Google and social networking enable news – both good and bad – to travel far and wide. Google Alerts have informed us that AVI’s stock has fallen below $1.00 and press releases talked about changes within the company. Amazing that we are all becoming experts on NASDAQ and stock prices!

 

Families participating in trials and others waiting for next exons and next steps, sit on the sidelines wondering and worrying.

 

I spoke with Chris Garabedian this morning (so…

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Added by Pat Furlong on December 21, 2011 at 11:30am — 5 Comments


Staff
Help Your Friends Make It Happen!



Some of the most asked questions we get at PPMD are:

  • How can I help?
  • How can my friends/family help?



Especially this time of year, our loved ones want to get involved and want to give. We want to make supporting PPMD as easy as possible for you, the person asking your online and offline world, to give and for the donor themselves. So we've come up with a few unique ideas to help you help your friends to make it happen!…



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Added by Will Nolan on December 16, 2011 at 9:28am — No Comments


Staff
PPMD’s 2011 Report Card

This time of year everyone is in holiday mode, or getting into holiday mode, or sick of being in holiday mode. But something else happens this time of year that effects many of us – especially our children. Report cards. The end of the year is when teachers meet with parents to tell them how little Timmy is doing in class. If Timmy is in high school or college, grades…

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Added by Pat Furlong on December 13, 2011 at 2:30pm — No Comments


Staff
Holiday Co-Blog

For the holidays, Pat and Ivy have co-blogged about words that are particularly used this time of year. These words are often redefined by our community because our everyday life requires new definitions. But that does not mean that we must be denied any of the joy of the holiday season.



Happiness and Joy

by, Pat…

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Added by Pat Furlong on December 7, 2011 at 11:47am — 4 Comments


Staff
Endocrine Meeting. Toronto. December 1 and 2, 2011

Endocrine issues are deeply personal to every one of us. They represent our masculinity, our femininity. They impact our weight, our height and how we look. As our boys with Duchenne grow and develop into adolescents, they and their parents are faced with these intensely personal and complex issues. The purpose of this meeting was to engage with experts to develop information related to these issues that parents and their sons might use with their physicians to encourage (or insist) upon a…

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Added by Pat Furlong on December 5, 2011 at 9:45am — 6 Comments


Staff
Redefining Normal

Redefining traditions. This year, Tom, my girls, my son-in-law, and I chose to gather in New York City for Thanksgiving. Well, "chose" may be the wrong word. New York City is just logistically easiest. The truth is, we would meet up with our girls in Antarctica if it meant we could be together during the…

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Added by Pat Furlong on November 22, 2011 at 3:00pm — 9 Comments


Staff
Thought for the week

Like every other profession in the world, there are inside jokes in medicine. Random friends and acquaintances send photos or comic strips characterizing nurses as battle-axes waving syringes or doctors ignoring the patient, calculating their golf game. In other cartoons, women are caricatured over time by the degree their breasts sag.



Today, I received this from a friend:…

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Added by Pat Furlong on November 21, 2011 at 10:24am — No Comments


Staff
Trying to Find Answers

The death of Brady Sherman (14 years old) is heartbreaking and strikes fear in the hearts and minds of every parent of every boy with Duchenne. It is so frightening that the idea of wrapping your son in bubble wrap to protect him or never letting him out of your sight, makes perfect sense.

 

Today we do not have any concrete answers about Brady. We have some ideas about what happened and have been connecting with experts (pulmonary, cardiology,…

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Added by Pat Furlong on November 9, 2011 at 12:30pm — 10 Comments


Staff
Co-Blog: To Have and Have Not with Duchenne

Co-Blog – The following is a co-blog put together by myself and Ivy Scherbarth, a mother from CO and PPMD’s FACES Coordinator for CO/WY. This is a new project we have started where we will both write on similar topics from two different perspectives, but living in the same world of Duchenne.

 

To Have and Have Not with Duchenne

by,…

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Added by Pat Furlong on November 8, 2011 at 11:30am — 4 Comments

World Muscle Society 2011 Report

At the recent World Muscle Society meeting, which took place in Portugal, a great deal of new data on exon skipping was presented, both on the status of current human clinical trials and on the efforts of investigators to improve the efficiency of the technique by combining exon-skipping with gene and stem cell delivery. Below are a few highlights from the meeting with the caveat that it was impossible to cover every poster and talk. 

 

Muscle Stem Cells

Jenny…

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Added by Sharon Hesterlee on November 8, 2011 at 9:30am — 4 Comments


Staff
DuchenneConnect Direct Access October Webinar: Updates in Genetic Testing

 

The New DuchenneConnect Webinar Series allows you direct access to key figures in the fight to end Duchenne. The October webinar, Updates in Genetic Testing, is now available online! Listen here: …

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Added by Ann Martin on November 3, 2011 at 8:30am — No Comments

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