Families in Pennsylvania Discussions (29)

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In need of a loaner pediatric power chair for a few weeks

I have a family whose son’s chair is broken, and the DME had to order parts, which may take a while to arrive (Possibly a month) Neither th…

Started by PPMD

0 Aug 5, 2014

Steriods or no steroids?

My sone was diagnosed with DMD last year, his doctors at CHOP want him to start steroids, his father and I face been pushing off starting t…

Started by Christina

0 Jun 12, 2014

Positive results with a new therapy

My son Lance has DMD.  For the last year we have been doing an experimental therapy.  Lance is the ONLY person in the country - probably t…

Started by Christine Marie Pierce

0 Dec 14, 2013

PA NEEDS MORE CONSTITUENTS FOR PACKET DROP-OFF

 PENNSYLVANIA - Let's hear from Constituents from all 18 Districts There's still time for PA constituents to participate in PPMD's Packet D…

Started by Gail D. McVicker

1 Feb 6, 2013
Reply by Perlita & Gordy Hains

ADVOCACY - PERSONAL DMD STORIES ADD IMPACT

REMINDER:  PERSONAL DMD STORIES GIVE ADVOCACY IMPACT!   PPMD's Advocacy Pre-Conference Webinar took place earlier today.  Again the HUGE IM…

Started by Gail D. McVicker

0 Feb 21, 2012

what therapies/treatment

Hi there I am new here and my son was daignosed with BMD a year ago. He is 3yrs old now. I have been waiting to ask this question somewher…

Started by Evelyn

8 Feb 17, 2012
Reply by Gail D. McVicker

DO IT FOR OUR BOYS - ADVOCACY FROM HOME

Dear Pennsylvanians, PA still has only 2 of our 19 districts represented in person for PPMD's Advocacy in Washington (February 25-27). Thos…

Started by Gail D. McVicker

0 Feb 13, 2012

OUR PERSONAL STORIES - A POWERFUL WEAPON

  Your Personal Story on a One Page Flyer PPMD is allowing me to help any family with Duchenne convert their personal story/photograph(s) i…

Started by Gail D. McVicker

0 Jan 30, 2012

The Pennsylvania Training Partnership for People with Disabilities and Families

Find statewide trainings you can use, for people with disabilities and families, at www.TheTrainingPartnership.org.    

Started by Paul Johnson

0 Mar 7, 2011

Advocacy 2011 - Anyone Going?

  Is anyone going to Washington, DC from Pennsylvania to advocate with this new 2011 Congress? There is a good website with great informati…

Started by Gail D. McVicker

0 Jan 21, 2011

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