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All Blog Posts Tagged 'PPMD Blog' (782)


Staff
Our View

So many times we view the world from the dark side, the part where we worry our sons (and daughters) may never see x or y, may never have this or that opportunity. I recall Kevin Smith standing up and telling us how he promised Zach there would be no limits on what he wanted to do or see, that if he wanted to see the top of a mountain, Kevin would put him on his back and show him the view. I think any of us would do that for our child or for our friend.

 …

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Added by Pat Furlong on March 14, 2012 at 4:30pm — No Comments


Staff
My Voice: Ricky Tsang, 30 years old

Our Featured Voice for March 2012 is 30-year-old, Canadian author, Ricky Tsang. If you are part of the Facebook world, you probably are friends with Ricky or have at least seen his name around. He is the author of the recently released, …

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Added by Will Nolan on March 13, 2012 at 4:30pm — No Comments


Staff
Rare Disease Leaders’ Forum 2012

This is my first visit to San Francisco, the city by the bay, home of the Golden Gate Bridge and Tony Bennett’s song “I Left My Heart in San Francisco,” a song from my younger days and one that, even today, sometimes gets in my head and repeats and repeats.



Some time back I was invited to…

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


Staff
Volunteers needed to Dine Out for Duchenne!

Do you love to go out to eat? Do you want to help fundraise, but don't have the time? Then this is the event for you!! You can participate whenever you visit a new restaurant without doing extra work! It's fast and easy!! 

 

Dine Out for Duchenne is a week-long, online event where people can…

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Added by Danielle Garrigan on March 12, 2012 at 4:30pm — No Comments


Staff
Co-Blog: Gravity

PPMD President Pat Furlong and Colorado FACES Coordinator Ivy Scherbarth discuss the bravery of their sons, and all young men fighting Duchenne. Please, share your thoughts after reading this month’s co-blog.



Strength

by Pat Furlong

Weakness. A familiar word in the context of…

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Added by Pat Furlong on March 8, 2012 at 4:30pm — 3 Comments


Staff
Reminder: Register Today for 2012 West Coast Connect Meeting

By now we hope you have heard that Parent Project Muscular Dystrophy will be hosting our first West Coast Connect Meeting, April 13-15, 2012 in San Diego, CA at the…

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Added by PPMD on March 7, 2012 at 10:00am — No Comments


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

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