PPMD Community

All Groups (126)

  • ataluren trial following up

    13 members Latest Activity: May 13, 2016 discussion about what we have to do

  • India

    28 members Latest Activity: Dec 11, 2016 For folks to share information about any research happening in India for Duchenne.

  • Memorial Wall

    12 members Latest Activity: Jan 19, 2016 Remembering our B/DMD Boys who looses the battle with Muscular dystrophy. As family and friends, we advocate and battle this disease...but the…

  • Step Mum's to kids with B/DMD

    2 members Latest Activity: Jan 31, 2012 Just a group to hear from other step mums about their experiences. Living full time with step kids or part time, dealing with the biological mums in…

  • Coach to Cure MD

    26 members Latest Activity: Oct 21, 2015 For those wanting to be a part of Coach to Cure MD and share events and ideas

  • DOCTORS

    14 members Latest Activity: Jan 15, 2016 A PLACE FOR EVERYONE TO SHARE WHICH DOCTORS THEY TAKE THEIR BOYS TO.

  • Kansas City Area DMD families

    10 members Latest Activity: Jul 12, 2016 All families with DMD/BMD children, in the Kansas City area, are welcome to post.

  • Western New York Families

    11 members Latest Activity: Jan 16, 2016 Families members of boys with DMD along with the boys themselves who are from the Western New York area.

  • FACES of South Texas

    17 members Latest Activity: Jun 28, 2012 FACES stands for Families Advocating Connecting, Educating and Supporting. This outreach group is part of PPMD's official volunteer outreach…

  • Medication/Supplement Journals

    59 members Latest Activity: Jan 29, 2016 A place to keep a journal of what
    medication(s)/supplement(s) you are giving to your child.

  • Illinois FACES

    15 members Latest Activity: Jan 15, 2016 A place to add suggestions, comments, ask questions or talk about anything with parents and caregivers in the Illinois FACES group.

  • Outliers - Intermediate between Duchenne & Becker MD

    45 members Latest Activity: Dec 15, 2016 The reading frame rule holds true 90% of the time. There remains those 10% that does not fit dmd/bmd phenotype. There is a 3rd form that may be…

  • DUPLICATION in DMD

    32 members Latest Activity: Feb 13 To bring closer the families with DUPLICATION which is Rare-most of all DMD mutations.

  • Duchenne Smiles

    115 members Latest Activity: Feb 27, 2014 A Duchenne smile is a True smile, cannot be faked and exemplifies true enjoyment.

  • Digital for Duchenne

    3 members Latest Activity: Jan 31, 2016 Have you Gone Digital with Creative Memories? Are you making StoryBooks and looking for a place to share your pages and get ideas?

  • SMDA

    4 members Latest Activity: Jan 30, 2016 suncity as it is called,strats its project of creating a support system so as to help the DMD patints.,by way of early detection,physical therapy and…

  • Tactile Sensitivities

    41 members Latest Activity: May 4, 2015 A group for all the families that have children with tactile sensitivities, to share experiences and tips on how to deal with the additional issues…

  • Exon Deletion 52

    11 members Latest Activity: Jan 24, 2015

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