Comment

Comment by Kristin Linke on July 27, 2017 at 9:26am

Mom of 3: 1- 15 yr old female carrier, 2 -10yr & 6yr old with DMD. I am a carrier as well.

Comment by Kristin Linke on July 27, 2017 at 9:24am

Why must we have such difficulty with getting things approved by insurance!!!!!

Comment by srinivas on December 11, 2016 at 12:40pm

Any updates for point mutation on 46 chromosome please update me.

Comment by Cathy Johnson on August 15, 2016 at 9:09am

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.

Comment by CHRISTINA RODRIGUEZ on June 27, 2016 at 11:11pm

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.

Comment by Cathy Johnson on June 22, 2016 at 2:38pm

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.

Comment by Amber on January 26, 2015 at 8:54pm

My son is 6. He is missing exons 48-50. I am trying to reach out to people in the Iowa area.

Staff Comment by PPMD on February 19, 2013 at 3:52pm

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!

Comment by danielle on December 16, 2012 at 4:13pm

hi i have a son jacob that is 7. i am looking for parents that know where we are in the dmd.

Comment by Donna Gluck on November 9, 2009 at 6:17pm

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

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