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Welcome to DMD Pioneers Mailing List!

DMD Pioneers is an international group for anyone with Duchenne Muscular Dystrophy (DMD) who has beaten the odds. We are in effect Pioneers, in that we have found ways to keep going and to deal with what we've got. Here we can share experiences, give advice or just talk about life in general. We should celebrate the fact that we are not statistics and are DMD Pioneers!

Due to the nature of discussion that goes on in the DMD Pioneers group, membership is limited to those who actually have DMD or parents of children with DMD who are at least 16 years of age. This is not meant to be a support group for parents of newly diagnosed children or as a means to find out about treatment options. This allows for open and candid discussion among members who have "been there, done that" when it comes to the childhood stages of this disease.

***Please be aware that certain topics may be of a somewhat personal and/or mature nature!***


DMD Pioneers.org

The new DMD Pioneers website at dmdpioneers.org has launched with new features including the DMD Pioneers Blog and the new flash based chat room. The blog is written by fellow Pioneers sharing our unique perspectives on living with DMD. The chat room is open 24/7 and is available to all those interested in participating.

Pioneer Profiles:

DMD Pioneers now has profile pages. Create your own and view others: click here.

Most Recent Messages

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Re: Wheelchair question
Becky, I also have a Permobil Street with a custom back and vent mounting bracket.  I have had the chair for 6 years and still runs great.  I have had to
Posted - Thu May 24, 2012 3:49 pm
Jacob Gapko
gapkoja
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Re: Genetic Testing
We had it done, insurance paid. ... [Non-text portions of this message have been removed]
Posted - Thu May 24, 2012 2:09 pm
Kim Weisel
kimweisel...
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Genetic Testing
Folks: Has anyone been denied reimbursement from Medicare or Medicaid or private insurance for genetic testing? My colleague, John Lauerman is researching this
Posted - Thu May 24, 2012 1:48 pm
Jessica Resnick-Ault
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Re: Wheelchair question
Josh has a Permobil Street. They have all the added accessories, we also had them build a tray in the back to put his vent and battery backup on. Kim ...
Posted - Tue May 22, 2012 7:46 pm
Kim Weisel
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Wheelchair question
Ben is 21, has had his wheelchair for 7 years, and we are looking into getting a new one that can also accommodate his vent (respironics), suction, oxygen etc.
Posted - Tue May 22, 2012 7:08 pm
Rebecca
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Message History

Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec
2012 89 47 11 16 13
2011 46 39 56 131 14 28 39 37 33 39 71 99
2010 50 42 66 73 70 164 67 134 54 35 82 15
2009 184 110 114 201 155 159 96 182 172 90 73 108
2008 243 307 257 271 308 251 368 172 136 190 256 147
2007 134 230 125 119 219 62 172 172 141 64 69 141
2006 632 359 177 117 135 490 185 217 140 144 101 78
2005 88 131 183 247 237 284 328 354 286 265 136 193
2004 231 460 250 138 247 250 487 309 161 231 410 336
2003 314 161 201 278 439 565 867 898 528 652 384 238
2002 40 55 57 131 273 60 76 287 485 595 561 502
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