"My son has been doing Pamidronate Infusions since last July. It's every 3 months for about 4(or more)hours. This July will be our last set of 3 days, then in October, we go to 2 days(still every 3 months) then next April, we will do 1 day and…"
"We have a 504 agreement for our son. We update it every year, or if something arises sooner, we can do it then. My son is in 9th grade and has had a one on one assistant since 6th grade. It sounds like you need to contact the Special Ed. Dept. of…"
"Hi Maggie! My son Josh(15) just had spinal fusion on May 8th. He spent a week in the hospital(2 days in the P.I.C.U) He was in pain the whole week in the hospital and about the week or week and a half after he came home, was completely off the pain…"
"Hi Barb! We just got back from Hawaii on April 7. We did not rent a wheelchair, we have our own manual chair. You can probably rent them from a pharmacy, but how about contacting the MDA and see if they have one in the loan closet? I know you can…"
"hi debby! I wanted to email b/c I never noticed you on here before, and we live in chadds ford. I have family in aston and chi. my son is 10. I would love to catch up at some point. my number is 302-438-7734"
"I don't know how the care is at C.H.O.P. We have always gone to Dupont. His Muscle team Dr.s are wonderful! Dr. Scavina(Neurology) Dr. Heinle(Pulmonology)and Dr. Mackenzie(Orthopedics) Dr. Mackenzie is the one who did his Spinal Fusion. Josh is…"
"My son has a deletion of 45. He is 15 and has been in a wheelchair fulltime for about 2 years. He just had spinal fusion on May 8th. Do you go to C.H.O.P.? We go to AI Dupont in Delaware, but we live in PA."
I live in Pottstown, PA and have two grandsons (ages 5 and 8) with Duchenne. I am reaching out to get more Pennsylvanian constituent activity when PPMD advocates in two weeks. If you know of any other families in PA could you…"
hi debby! I wanted to email b/c I never noticed you on here before, and we live in chadds ford. I have family in aston and chi. my son is 10. I would love to catch up at some point. my number is 302-438-7734
I live in Pottstown, PA and have two grandsons (ages 5 and 8) with Duchenne. I am reaching out to get more Pennsylvanian constituent activity when PPMD advocates in two weeks. If you know of any other families in PA could you please share?
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.
I see you live in Aston which isn't too far from Quakertown. Would you be able to join the PA familes in this area to help with the fundraiser in October? We will need people to man the ticket table and the games.
If so please email me at firstname.lastname@example.org so I can put you on the mailing list.