I am travelling with my son this Thursday on a 4 hour flight. It's become much harder for him to walk recently and taking him to the bathroom on a plane is risky and difficult. Does anyone know of a device that can be worn during a plane flight which I can dispose of in the bathroom and attach another one? See More
"this is a battle most of us parents fight. my son is 8 and he does pt in school once a week and outside of school once a week. the actual pt doesnt think that it is beneficial for my son to do more than 45 minutes a week in pt. he is now in a wheel…"
My son is now 12 years old and ambulatory. He has been receiving PT from a professional 5 days per week for the past 5 years. The insurance company has now decided that 1 to 2 days per week is sufficient and there is no "medical necessity" for 5 days per week. I have an opportunity to appeal that decision and am trying to put together a comprehensive set of information from publications and anecdotal data that shows that 5 days per week is beneficial to the health of the 12-year old DMD patient…See More
"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…"
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. 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.
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 STORIESraises awareness, raises concern and makes others want to join in the fight against Duchenne.
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.