susan
  • Female
  • Lansdale, PA
  • United States
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  • cindy q
  • Jacobs Mommom
 

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Profile Information

Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Lansdale, Pa

Comment Wall (5 comments)

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At 12:04am on February 17, 2012, Gail D. McVicker said…

Dear Pat,
I am a grandmother of two young boys with Duchenne who lives in Pottstown, PA. I am reaching out to you and other Duchenne familes in PA for input so we can maximize our chances when a few of us go to Washington to advocate for government support. We need to share our personal stories so that they really understand what DMD is all about.

 

I am sending out the following reminder to maximize constituent activity for PPMD's Advocacy effort coming up in two weeks. We will increase our chances to get government support for our boys by sharing how Duchenne has touched our lives. You won’t even have to leave your home.
Gail
If you can't attend PPMD’s 2012 Advocacy conference in Washington, DC, there other ways to to advocate and help get government support for DUCHENNE. To date, we only have 2 or Pennsylvania’s 19 Congressional districts backed up by actual Duchenne constituents.  Those of us that are there will pick up other PA districts that are not ours. We need to have input (personal stories) from 17 more Congressional Districts in Pennsylvania to help our boys as effectively as possible.

YOU WON'T EVEN HAVE TO LEAVE YOUR HOME!

The goal this year is called 50 STATE CHALLENGE . This means we hope for Duchenne advocacy input from constituents from all 50 states and, hopefully, all congressional district. Pennsylvania, so far, needs input from 17 of its 19 districts. Here's how to do this without traveling to Washington – or anywhere. WE STILL HAVE TIME TO DO THIS.

http://www.parentprojectmd.org/getactive    (Scroll down and read Options #2 and #3.)

QUICK WAY:
You can sign-up for the Packet Drop Off (link provided above and below) where you can also fill out a quick survey (include a photo if you wish) regarding your situation.  This information will be included in the packet delivered to your Congress rep.


 MORE-IN DEPTH:
You can also get free help to create a more in-depth one-page flyer about your situation that can be included in the Drop Off Packets and delivered to your representatives by those who do go to Washington. The flyer telling your story can be duplicated for additional copies, easily sent as an email attachment, and can be easily edited for other Duchenne-related awareness and fund-raising purposes.  Visit link below to see a sample flyer.

SHARING OUR PERSONAL STORIES raises awareness, raises concern and makes others want to join in the fight against Duchenne.

http://www.parentprojectmd.org/getactive    (Scroll down and read Options #2 and #3.)

Thanks for reading this.

Gail

 

Personal Stories so Congress will help boys with Duchenne

At 11:34am on June 24, 2008, Jacobs Mommom said…
Hi Susan:
Thanks for getting back to me. My daughter and I were so excited to have found a boy Jacobs age and thought he lived close.

Is Cindy Q the mother of your nephew? If so I will see if she wants to be added to my friends group.
At 8:12am on June 23, 2008, cindy q said…
Hi Sus!
Thanks for joining me here! I think you'll find this site a huge support. I do! If we set each other up as "friends" then messages can be private. If it something you want to share with the community then send as a "Comment". Let's talk about the Run for Our Sons. I havn't been training but it might be fun for us to go and be a part of the event in Phil. We'll talk soon!
Thank you for finding this site!
At 10:48am on June 18, 2008, Jacobs Mommom said…
Hi Susan:

I'm the MomMom of Jacob who will be 8 in July and was diagnosed with Duchenne last year. My daughter and her family live in Lansdale and were looking to find a playmate for Jacob.

Please let me know if you would be interested!
At 11:16am on June 4, 2008, susan said…
Looking forward to the Family "Rocky" Run in Phila this July
 
 
 

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