We'll be staying at the Children's Inn at the NIH in Bethesda, MD June 15 -18 if anyone nearby would like our boys to meet. Our son Garrett is age 7. - Ronnie
Hi,
I have written on several other groups on PPMD groups. I amlooking for volunteers for my research project. I need boys with DMD to draw a picture then tella story surrounding emotions. I willask his mother toanswer 4 questions about her experience. The data will be confidential and private. Thanks for considering! Donna Gluck
PPMD has launched a program – Risk/Benefit in Duchenne Therapies – to help inform the FDA and other government agencies, biopharmaceutical companies, and others about the treatment priorities and risk tolerance of the Duchenne community.
We’ve had a great response to our first survey, with more than 90 participants so far, but need a few more before we close it tomorrow.
If you are a parent or guardian of a child who is able to walk some, but is having a lot of difficulty, please consider taking our survey before 9 PM eastern tomorrow.
Does anyone have a health aid in school that you employ (vs. the school district)? My rising 5th grader goes to a private school that is requiring him to have an aid in order to return to school next year. I'm scrambling trying to find someone and then find someone to pay for it. The small school is good for him and I want to stay there if at all possible.
Hi, my friend is actually having the same situation as you. Her son is also going into to the 5th at a private school. She decided to hire one of her relatives.
Garrett Rodes,
Jun 5, 2008
Wendy St.Geme
Aug 3, 2008
Donna Gluck
I have written on several other groups on PPMD groups. I amlooking for volunteers for my research project. I need boys with DMD to draw a picture then tella story surrounding emotions. I willask his mother toanswer 4 questions about her experience. The data will be confidential and private. Thanks for considering! Donna Gluck
Nov 9, 2009
danielle
hi i have a son jacob that is 7. i am looking for parents that know where we are in the dmd.
Dec 16, 2012
Staff
PPMD
PPMD has launched a program – Risk/Benefit in Duchenne Therapies – to help inform the FDA and other government agencies, biopharmaceutical companies, and others about the treatment priorities and risk tolerance of the Duchenne community.
We’ve had a great response to our first survey, with more than 90 participants so far, but need a few more before we close it tomorrow.
If you are a parent or guardian of a child who is able to walk some, but is having a lot of difficulty, please consider taking our survey before 9 PM eastern tomorrow.
Thank you for your participation!
Feb 19, 2013
Amber
Jan 26, 2015
Cathy Johnson
Does anyone have a health aid in school that you employ (vs. the school district)? My rising 5th grader goes to a private school that is requiring him to have an aid in order to return to school next year. I'm scrambling trying to find someone and then find someone to pay for it. The small school is good for him and I want to stay there if at all possible.
Jun 22, 2016
CHRISTINA RODRIGUEZ
Jun 27, 2016
Cathy Johnson
I'm interview home health aids for the first time. Does anyone have any advice? The aid will accompany James to school. This is all very new to me.
Aug 15, 2016