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Latest Activity

Adam J Herrmann is now a member of PPMD Community
May 22
Danielle Dwiggins joined Lisa Jones's group
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Illinois/Missouri Families

This group is for families from Illinois and Missouri
May 21
Danielle Dwiggins is now a member of PPMD Community
May 21
Tania posted a discussion

Deflazacort versus Prednisone

Hi, my 5 year old son was recently diagnosed with Duchenne. We are due to start him on Deflazacort next week. We also have the option of giving him Prednisone instead. What would you recommend?
May 10
Tania is now a member of PPMD Community
May 7
Katie Chase is now a member of PPMD Community
Apr 14
M Dak replied to Eddy Rivera's discussion My son has Duchenne, be appropriate to give Creatine? Thank you for your answer
"Hi Eddy, did you get any more information on this?  We too are thinking of doing this.  Creatine seems to be a myostatin inhibitor.  Our son was in a clinical trial for myostatin inhibitor "Anti-Myostatin Adnectin…"
Mar 28
M Dak is now a member of PPMD Community
Mar 25
Ashlie Robinson posted a discussion

Non-Contiguous Mutations

I know this may be a long shot but does anyone have a non-contiguous duplication mutation? Our son has a duplication at 8-18 then again at 63-79+...
Feb 19
Maris A is now a member of PPMD Community
Feb 11
Ashlie Robinson is now a member of PPMD Community
Feb 5
Satbir Dahiya is now a member of PPMD Community
Jan 24

Staff
Nicole Herring replied to Jennifer's discussion 3yr old looking for suggestions
"Hi Jennifer! If you'd like to email our Care team they can offer some suggestions for you. Rachel Schrader heads up our Care team and can be reached at rachel@parentprojectmd.org. "
Jan 20
Jennifer posted a discussion

3yr old looking for suggestions

My son is 3 we live in an area with little to no services, he seems sore sometimes and his doctor thought maybe you guys would have ideas?
Jan 7
Jennifer favorited Jennifer's profile
Jan 7
Profile IconRyan Dietsch and Jennifer joined PPMD Community
Jan 7

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