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

Started by PPMD Aug 5, 2014. 0 Replies 0 Favorites

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 the DME nor the local MDA has a chair available. They have…Continue

Steriods or no steroids?

Started by Christina Jun 12, 2014. 0 Replies 1 Favorite

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 them because we don't see the benefit of them , there just…Continue

Positive results with a new therapy

Started by Christine Marie Pierce Dec 14, 2013. 0 Replies 0 Favorites

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 the world - to be trying this therapy.  We are having what I…Continue

PA NEEDS MORE CONSTITUENTS FOR PACKET DROP-OFF

Started by Gail D. McVicker. Last reply by Perlita & Gordy Hains Feb 6, 2013. 1 Reply 0 Favorites

 PENNSYLVANIA - Let's hear from Constituents from all 18 DistrictsThere's still time for PA constituents to participate in PPMD's Packet Drop Off taking place in Washington, DC next Monday and…Continue

ADVOCACY - PERSONAL DMD STORIES ADD IMPACT

Started by Gail D. McVicker Feb 21, 2012. 0 Replies 0 Favorites

REMINDER:  PERSONAL DMD STORIES GIVE ADVOCACY IMPACT! PPMD's Advocacy Pre-Conference Webinar took place earlier today. Again the HUGE IMPACT of sharing our personal stories was emphasized - along…Continue

what therapies/treatment

Started by Evelyn. Last reply by Gail D. McVicker Feb 17, 2012. 8 Replies 0 Favorites

Hi thereI 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 somewhere for a year. What therapy/treatment are you doing with your…Continue

DO IT FOR OUR BOYS - ADVOCACY FROM HOME

Started by Gail D. McVicker Feb 13, 2012. 0 Replies 0 Favorites

Dear Pennsylvanians,PA still has only 2 of our 19 districts represented in person for PPMD's Advocacy in Washington (February 25-27). Those who are attending will be visiting districts other than…Continue

Tags: 50, STATE, CHALLENGE, 2012, Pennsylvania

OUR PERSONAL STORIES - A POWERFUL WEAPON

Started by Gail D. McVicker Jan 30, 2012. 0 Replies 0 Favorites

 Your Personal Story on a One Page FlyerPPMD is allowing me to help any family with Duchenne convert their personal story/photograph(s) into a concise one-page flyer (see attached sample). I have a…Continue

Tags: Pennsylvania, stories, personal, flyers, advocacy

The Pennsylvania Training Partnership for People with Disabilities and Families

Started by Paul Johnson Mar 7, 2011. 0 Replies 0 Favorites

Find statewide trainings you can use, for people with disabilities and families, at…Continue

Advocacy 2011 - Anyone Going?

Started by Gail D. McVicker Jan 21, 2011. 0 Replies 0 Favorites

 Is anyone going to Washington, DC from Pennsylvania to advocate with this new 2011 Congress?There is a good website with great information about Advocating in Washington --…Continue

Tags: Pennsylvania, PA, advocacy