Manu Gambhir
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  • Philadelphia, PA
  • United States
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  • Gail D. McVicker
  • Jacobs Mommom

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Started this discussion. Last reply by Manu Gambhir May 5, 2014. 2 Replies


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Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
Philadelphia, PA

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At 11:58pm on February 16, 2012, Gail D. McVicker said…

Hi Manu,
I am reaching out to you and other Duchenne families in PA so that we can have more backup in asking Congress to support DMD interests. I live in Pottstown, PA and have two grandsons with Duchenne.
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.
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.


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.    (Scroll down and read Options #2 and #3.)

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.

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.    (Scroll down and read Options #2 and #3.)

Thanks for reading this.



Personal Stories so Congress will help boys with Duchenne

At 8:28pm on January 9, 2010, Jacobs Mommom said…
Hi Manu: Thanks for contacting me. My grandson, Jacob, is 9 years old and we would love to get intouch with you and your family.
Are you going to the Advocacy Conference in February?
My phone number is 215-345-7421 and you can reach me in the evenings.

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