"Is there a way to explain, very clearly in layman's fashion, what the specific tools resources and authorities are that we are urging the FDA to use? (and maybe that they haven't been using or might not use?). How long they have been in…"
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 Tuesday (Feb. 23 + 24, 2015). If you know of any PA constituents from anywhere in the state, please direct them to:…See More
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 with a photograph(s}. The climate in Washington, DC this year is especially challenging. Even if you can't attend PPMD’s 2012 Advocacy conference in Washington, DC, there other ways to raise awareness and help get (and/or maintain) government support for DUCHENNE.YOU WON'T EVEN HAVE TO LEAVE YOUR…See More
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 background in digital graphic design and journalism and am enthusiastic about volunteering this service. Flyers are effective when communicating with Congress because they are well thought out and cover key points. They can be included in the PPMD packets we leave with members of Congress to be…See More
I will be making the trip to Washington, DC next month to advocate for Duchenne Muscular Dystrophy. I'm from Pennsylvania and to date we only have people from 2 of our state's 19 congressional districts that have registered.The purpose of this message is to ask some of the Duchenne families who won't be coming to Washington this year to share their stories so that they can make an impact in Washington, home districts, or by email. When we come to Washington in person to advocate, we visit our…See More
I am the grandmother of two cherished boys with Duchenne who were diagnosed in the summer of 2008. I live in Pennsylvania but am originally from Syracuse, New York. I teach photography. Photoshop and online history. My true calling is photo-journalism. Everyone needs to share their story of Duchenne -- if you need help doing this (creating a flyer or care for others to see) please let me know. You can also find me on Facebook.
About my family:
I have two daughters and five grandchildren. One daughter's only two children have Duchenne. They are Jake (11) and Ryan (8). They were diagnosed 7 years ago. I am so fortunate to live within 15 minutes of them so I know them well. Until I had grandchildren, I never knew I could love that much. Duchenne makes you try to balance of severe heartbreak and joy. We have to tell others our stories because many (most) do not even know Duchenne exists.
Name(s) of child(ren)/individual(s) with Duchenne:
Jake and Ryan
Age(s) of child(ren)/individual(s) with Duchenne:
Comment Wall (1 comment)
You need to be a member of PPMD Community to add comments!
Hi it's David, I don't know if you remember but I was the person who messenged you. I said that I was looking for others who had Duchenne that I could spend time with. I am an only child and I was looking for some friends. It sounds like you would be the perfect person meet. I am 23 three years old and I Duchenne muscular dystrophy. I live in Berks county and Pottstown is kind of a hike for me. It's about forty five minutes away from me. But I still would like to stay in contact with you. If you would like I can give you my email address and we can see if we want to meet at some point. Just let me know. Have a good rest of the day and God bless.