PPMD Community

February 2012 Blog Posts (19)


Staff
Action Alert! We need your support!

While our Duchenne advocates (like 10 year old Anthony, pictured right) are out on the Hill today, urging their Members of Congress to preserve critical funding for Duchenne research and education programs, we need YOU to take a moment and advocate from home with us!



All it takes is a call or an email to make sure your voice is heard! Check out our Take…

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Added by PPMD on February 28, 2012 at 10:09am — No Comments

Tips for parents for dealing with stress

Hi everyone.

As a wellness coach one of the biggest issues my clients deal with is stress. DMD parents obviously have a large amount of stress in there lives so i'd like to discuss some ways to reduce stress.



Stress reduction tips and techniques:

  • Identify the source of your stress
  • Avoid unnecessary stress
  • Alter the situation
  • Adapt to the stressor
  • Accept the things you can’t…
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Added by Darren Corona on February 28, 2012 at 10:00am — No Comments

Wyatt turns 4

This morning at 1:40am my sweet baby Wyatt turned 4.  I can't believe I'm even looking at that number 4.  4 is a big kid, what happened to my "baby!"  I'm  honored and blessed to call myself Wyatt's mom.  He is brave, strong, and giving.  This kid has made me a better person, there is no doubt in my mind.  I am so lucky to know this child, to have this child a part of my life.  Every second, every minute, I treasure and adore him (even when he's a monster, hahaha).  Thank you Wyatt for…

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Added by Wyatt's Mommy, Melissa on February 22, 2012 at 5:24pm — No Comments


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

Introductory post I'm a coach offering my services.

 Good afternoon all. Some here know me but most probably do not. My name is Darren Corona and although I do not have anyone in my family with Duchennes I do run with the team Aidan's 12 to help raise money.



 I make my living as a wellness coach, all that means is that I work with families and businesses to create a program to help everyone achieve a healthier lifestyle. While down at WDW this past January  I was able to interact with the DMD families I got to see first hand…

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Added by Darren Corona on February 15, 2012 at 2:36pm — No 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

Advocacy is what we can do from home too!

My family has made advocacy part of our End Duchenne agenda for many years.  My daughter Kat, Jon, and I have always tried to attend the advocacy conference.  This year Kat and I will attend; but Jon’s college studies will prevent him from attending.  Biology, Analytical Chemistry, and English are taking up his free…

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Added by Christine Piacentino on February 9, 2012 at 5:47pm — 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

Do I believe

Do I believe

At first I felt nothing.  Listening to him I felt numb, as though all life had just been drained from me. I stood frozen unable to move or think.  I watched as the Doctors lips moved while he spoke to me.  His tired red eyes teared as he looked into mine. Deep inside me, I already somehow knew what he was telling me. …

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Added by Rita Felling on February 6, 2012 at 2:14am — 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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