PPMD Community

September 2011 Blog Posts (13)


Staff
See Something, Say Something

Frequently I take the train from Penn Station in NY to somewhere. Hackensack, NJ,  Metro Park, NJ, Front Street Station, Philadelphia or Union Station in Washington, DC. At regular intervals, announcements are made about trains, tracks, delays, changes, typically followed by the words, we work hard to…

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Added by Pat Furlong on September 30, 2011 at 1:30pm — 1 Comment

My dose of hope for today

53 minutes on a horrible medical issue, but talks about almost all the issues I think about as a Duchenne Parent.

 

http://www.youtube.com/watch?v=-EJBMc9HxtQ&feature=player_embedded#!

 

There is hope

Added by Tulika on September 30, 2011 at 1:53am — 2 Comments


Staff
This Is It! Time to Tackle Duchenne!

This Is OUR Moment!

Tomorrow is the 4th Annual Coach To Cure MD and we hope your day includes watching or attending one of the hundreds of games that will be displaying our patches. This community has come together yet again to tell the country about Duchenne, to raise awareness,…

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Added by PPMD on September 23, 2011 at 4:28pm — No Comments

Thank you. He usually has a small on his face most of the time and is quite the little joker in the family. Tyler is doing fairly well and is still able to get around although he is having more and m…

Thank you. He usually has a small on his face most of the time and is quite the little joker in the family.

Tyler is doing fairly well and is still able to get around although he is having more and more difficulty doing so.  When we go places that require long walking distances we usually take his motorized scooter with so he is able to keep up and not get so tired.  His scooter he thinks is so COOL!!! We have noticed more frustration on his part because he is realizing now that he…

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Added by Vickie Bielefeldt on September 20, 2011 at 10:39pm — No Comments


Staff
Five Days Left & Plenty of Time To Win!

Today's the Day: Get in the Game!



With five days left until Coach To Cure MD on September 24, you probably think that it's too late to join our team this year. But it's not! Participating in Coach To Cure…

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Added by PPMD on September 19, 2011 at 2:13pm — No Comments

This is my son, Tyler.  He was diagnosed in April 2005. 

This is my son, Tyler.  He was diagnosed in April 2005. 

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Added by Vickie Bielefeldt on September 16, 2011 at 10:31pm — 2 Comments


Staff
NORD Submits Citizen's Petition to FDA Regarding Orphan Drug Reviews

I am proud to have joined the NORD board earlier this year. And I am particularly proud of the petition recently submitted to the FDA.

 

NORD's petition raises the collective voice of rare disorders regarding regulatory issues. Rare disorders present opportunities and challenges for the FDA. NORD's request for a statement of policy will provide guidance for this shared concern. Rare diseases have come of age and this policy will be critical if we are to develop treatments for…

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Added by Pat Furlong on September 9, 2011 at 9:00am — 2 Comments


Staff
Co-Blog: Anniversaries

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.

 

The Anniversary

by, Ivy…

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Added by Pat Furlong on September 8, 2011 at 11:30am — 6 Comments

Hi Jill

My brother, Andy contacted you.  I am wondering if you can contact me here in Omaha.  My two grandsons have DMD and I am looking for a support group or a PPDMD in NE.  wlundeen@cox.net  Thanks, Jill  Wendy

Added by Wendy Lundeen on September 7, 2011 at 5:18pm — 1 Comment


Staff
Leveraging the United Way: Raise money to fight Duchenne

The annual, Fall United Way campaigns are getting underway throughout the country. Last year many families had great success leveraging both the annual United Way campaign and Combined Federal Campaign (CFC) to raise money to fight Duchenne. Many people have a tradition of donating to the United Way, are expecting their company campaigns to start, and are looking for good causes to earmark…

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Added by PPMD on September 6, 2011 at 3:00pm — 2 Comments

Human Spirits for the New York City ING Marathon!

 

 Ludovic Raymond is a co-worker who moved from Paris France to Buffalo NY. He defines himself as a ‘real’ runner since…
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Added by Christine Piacentino on September 5, 2011 at 7:30am — No Comments

Labor Day

I put on my green water waders pulling them over my knees, tightening the straps around my slender thighs. Stepping off the dock into the lake, instantly I could feel the coolness of the water through the rubber, as it encircled my boots. I scanned the shore line, following its path as far as I could see. The worn earth from the summers flooding made the banks appear almost jagged in spots. It was clear there was so much needed work ahead. Mechanically I began moving rocks back to the shores… Continue

Added by Rita Felling on September 3, 2011 at 12:31pm — No Comments


Staff
Word Association

9.24.11

This month is our month. As a community, September has come to mean the start of the school year, vacations are over, sleeves are rolled up, and the nitty gritty work of ending Duchenne kicks into high gear. And September means Coach To Cure MD.  I am not a football expert, but I follow the sport and I was struck by how their terms and our terms sometimes parallel each…

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Added by Pat Furlong on September 1, 2011 at 10:30am — No Comments

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