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All Blog Posts Tagged 'PPMD Blog' (736)


Staff
Vote for Duchenne in the 2012 Neuro Film Festival!

The trailer for "Duchenne With A Future: The Power To Live," a documentary about the success factors of living an adult life with Duchenne, has been entered into the American Academy of Neurology's 2012 Neuro Film Festival! By enrolling we hope to promote research and raise Duchenne awareness.…



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Added by PPMD on March 6, 2012 at 7:00pm — 1 Comment


Staff
Everyone Gives

Everyone gives something to somebody for something. Whether through acts of kindness, services, or hard-earned money, everyone has the opportunity to make the world a better place. No energy required. 

 

Literally from the comfort of our couch, we are able to reach across the world to support others in need. 250,000 boys/young men have Duchenne. They live everywhere,…

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Added by Pat Furlong on February 22, 2012 at 3:00pm — No Comments


Staff
PPMD Announces Board Approved FDA Policy

As you know, ensuring appropriate federal funding for Duchenne research has been a cornerstone of PPMD’s advocacy agenda over the past decade. Our persistence – your persistent and collective voice - has paid off with over $250 million directed to Duchenne research.

 

Today we now find ourselves at a pivotal moment with multiple potential therapies for Duchenne in various stages of the development process. We must now, once again, look forward to what is next for Duchenne.…

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Added by PPMD on February 21, 2012 at 10:00am — No Comments


Staff
PPMD FDA Policy and PDUFA

I don’t know about you, but when I am in DC or receive government related information, I am always about 3 acronyms behind in the conversation.  PDUFA – this is one acronym you want to put in your memory bank for 2012.  PDUFA – Prescription Drug User Fee Act.

 

This legislation is all about FDA, about what biotech’s/pharmaceuticals have to pay for the process, about rare disorders and incentives to develop drugs for rare conditions, and about the process of…

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Added by Pat Furlong on February 20, 2012 at 10:30am — 5 Comments


Staff
Go West! Join PPMD in a variety of West Coast events!

We are excited to announce a 2012 calendar full of events on the West Coast!

 

West Coast Connect Meeting

First, PPMD is excited to host our first West Coast Connect Meeting, April 13-15, 2012 in San Diego, CA. This will be a great opportunity to…

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

Critical Care Resources for Your Family

PPMD continues to bring you the most up-to-date care resources, so that you and your family and everyone who helps care for your son, has the information they need at their fingertips. Here are some recent updates we wanted you to be aware of:

 

  • The Psychology of Duchenne Muscular Dystrophy

    Jos Hendriksen, Ph.D. and a team of behavior experts…
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Added by Holly Peay on February 13, 2012 at 11:00am — No Comments


Staff
New Sporting Fundraiser: Ice Duchenne

I am so excited to announce a new sporting fundraiser we have this year called Ice Duchenne!

PPMD has partnered with the Central Collegiate Hockey Association Coaches (CCHA) this weekend, February 10th and 11th. The coaching staffs of all 11 teams will band together to help raise awareness for Duchenne and wear pins with the…

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Added by Danielle Garrigan on February 9, 2012 at 11:30am — No Comments


Staff
Update from Gunter Scheuerbrandt

Biochemist Gunter Scheuerbrandt has been following exon skipping for the international Duchenne community for years. Read the latest update from one of this community’s greatest allies.

 

Quick Links

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Added by PPMD on February 8, 2012 at 11:30am — No Comments


Staff
Opening Up

PPMD President Pat Furlong and Colorado FACES Coordinator Ivy Scherbarth co-blog about vulnerability and what you risk when you open your heart to people. One the one hand, we risk fraud – a subject Ivy has been dealing with intensely with her family, as of late. But at the same time, our vulnerability allows us to love and be loved. Pat and Ivy explore two perspectives on a similar idea.

 

Vulnerability

By …

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Added by Pat Furlong on February 7, 2012 at 10:30am — No Comments


Staff
Upcoming Webinar: Exon Skipping

PPMD welcomes Dr. Padraig Wright from GlaxoSmithKline as our guest for a webinar on February 22, 2012 at 1pm eastern.

 

  • Topic: Exon Skipping
  • When: Wednesday, February 22, 1pm eastern
 
About

GSK2402968 is an antisense oligonucleotide…

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Added by PPMD on February 6, 2012 at 4:30pm — No Comments


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

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