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Living with Duchenne (age 18+)

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Living with Duchenne (age 18+)

Members: 61
Latest Activity: Aug 29

Discussions

DMD young men in Cincinnati, southwestern Ohio

Started by Rebecca Lilley. Last reply by Emily Wiebe Aug 29. 1 Reply

Undiagnosed Pain

Started by Kathy Guthy. Last reply by Ian Conner Jun 27, 2011. 3 Replies

Comment Wall

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Comment by Aun Bin Yousuf on June 18, 2015 at 12:03pm

hey all

Comment by Doan Nguyen Xuan on September 5, 2013 at 8:46am

Hi everyone. I would like to wish group all the best. My name is Doan - Leader of Vietnamese DMD club, I have lived with Duchene muscular dystrophy for almost 30 years.

I'm trying my best to head to a bright future for all the members in club. The club is quite young in age, so hopefully our club could connect to and learn from PPMD community.


Staff
Comment by PPMD on February 19, 2013 at 3:48pm

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 an adult with Duchenne who has lost the ability to power their own wheelchair, please consider taking our survey before 9 PM eastern tomorrow.

Comment by Ashok Laishram on September 26, 2011 at 1:32pm
Can anyone share on Stem Cell treatment for duchenne boys.....Thanks
Comment by Deb Robins on July 10, 2011 at 8:13am
Please send survey to all? Esp Aussies but not exclusively -Klair wants all opinions.  Both partners fill out .  http://goo.gl/kUz5T
Comment by ewh on June 13, 2011 at 3:01pm

I am working on getting a full ride scholarship for boys with DMD at a Boston University.  I am looking for some stories about why you/your son goes to go to college to help my presentation.

Thanks

Comment by catherine jayasuriya on February 8, 2011 at 1:20am
Comment by catherine jayasuriya on October 17, 2010 at 1:58am
My son Dusty turns 18 in a few weeks!
Comment by lynn weatherford on April 16, 2010 at 2:42pm
My son is 26. He was diagnosed at age 6. He is currently attending local community college part time. My husband and I have been married for 28 years. We have three kids. Dake is 26 with DMD,Lyndsey is 24, and Gracey is 9.
Comment by Kathy Guthy on November 16, 2009 at 9:20am
Hi, I'm Kathy and my son Chris is 20. He was diagnosed at age 3. I have a younger son, Bryan who is 18 and does not have DMD. I am married 25 yrs and we live on Long Island. Chris attends college in his power chair with his personal assistant. Chris is shy and I would love him to participate in an online group for young people. Does anyone have any suggestions?
 

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