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    josh Feb 16 2019 8:07 pm

    I can't wait to see the new release of "A Father’s Fight.” Mark's passion for raising awareness of Duchenne muscular dystrophy is intense, effective, and inspiring.

    Have you seen the 2009 documentary? Are you looking forward to the new release?
    http://whitmanhansonexpress.com/film-tells-story-of-a-fathers-fight/

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    WilsMom Feb 16 2019 1:55 pm

    The UT Southwestern Wellstone Muscular Dystrophy Center Duchenne/Becker Muscular Dystrophy Clinical Symposium is on March 30th from 9am-4pm in Dallas, TX. Refreshments sponsored by CureDuchenne. RSVP by March 1st to wellstone@utsouthwestern.edu. Dr Eric Hoffman, Keynote Speaker, will be highlighting “Promising Treatments for DMD- Vamorolone and Exon Skipping.” Hope to see you there 💙

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    Bruce Feb 15 2019 9:32 pm

    The XVII INTERNATIONAL CONFERENCE ON DUCHENNE AND BECKER MUSCULAR DYSTROPHY will begin streaming from Rome in 9 hours.

    The agenda is available at http://www.parentproject.it/wp-content/uploads/2019/01/PROGRAMMA_INGLESE_alta.pdf

    The URL for the stream is https://www.youtube.com/watch?v=iwH0qFEf_7g

    I enjoyed watching the presentations last year. Much of the content is English language.

    I am particularly excited about the these presentations;
    Read more

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    DMDmamaof2 Feb 12 2019 6:56 pm

    My son DNA results show a splice acceptor, c.5026-2A>G. How do I know what exon they are missing?

    I'm still learning, so if someone could help me out, that would be great!

    Thank you!

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    Bruce Feb 8 2019 8:30 pm

    In the spirit of inspiring hope I would like you to read this article about the lives of four men who are succeeding in life despite Duchenne.

    I would like to thank my friends Leonardo Feder, Jon Rey-Hastie and Matt Martin for sharing their stories.

    https://musculardystrophynews.com/2019/02/08/defying-the-odds-of-living-with-duchenne-decade-after-decade/

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    dlowrls Feb 7 2019 6:03 pm

    Everest to End Duchenne 2019 Trek

    Join us for a once in a lifetime experience beginning the last week in February, 2019 for our THIRD Everest to End Duchenne event where we will together trek through the Himalayan Mountains in Nepal, to Mount Everest Base Camp. Through the Hope for Gus Foundation – a non-profit that raises funds for research to cure Duchenne muscular dystrophy – participants will travel to Nepal to trek for the boys with Duche

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    Milan Patel Feb 6 2019 4:05 am

    We should all do this DMD challenge! Destroy Duchenne was started by 17-year-old Elijah Stacy who has DMD. They launched the #DMDIceCupChallennge recently and I actually spoke to him about and he said it has been quickly growing and gaining attention.

    https://www.destroyduchenne.org/dmd-ice-cup-challenge/

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    DMDmamaof2 Feb 5 2019 8:06 pm

    I have two son that were diagnosed with DMD this past June and October. My oldest Bliss, who will be 7 in a couple months, has been on Prednisolone since the end of June. I stretch him everyday. We are currently on the list for 2 trials out of Nationwide Children's Hospital in OH. My youngest who is 3, his doctor started him on Prednisolone on the weekends, which is not working out for he refuses to take it.

    Am I missing anything or do we see…Read more

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    TeamLevi Feb 2 2019 12:58 am

    My son has been prescribed a cough syrup that contains hydrocodone. Does anyone have experience with this? I am concerned about possible side effects. Any info is much appreciated.

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    DMDwife Feb 1 2019 5:31 pm

    My husband has DMD and will be turning 43 in April. I am his caregiver and also disabled myself but we persevere through the challenges of the human experience in our own unique way. I would like to provide hope for young boys with DMD their parents and loved ones. Feel free to ask questions I will try to help however I can.
    Audrey

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    Jessica Rothe Jan 31 2019 7:16 pm

    Hello everyone! I wanted to let you know about a new program that PTC launched called Peer Navigator. If you are thinking of starting steroids or have questions about using steroids, this is a great resource for support if you need someone to talk to. It's a difficult decision in the beginning for many families and I think it's nice to know there is help if needed. You can call anytime at (866)282-5873 or email peernavigator@ptcbio.com. Thanks!…Read more

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    josh Jan 30 2019 3:48 pm

    I recently discovered this organization and immediately fell in love with their mission. It's beautiful! I thought I'd share it here in case any of you might be interested in requesting a song.

    The Songs of Love Foundation is a national nonprofit 501(c)(3) organization that creates free, personalized, original songs to uplift children and teens currently facing tough medical, physical or emotional challenges.

    https://www.songsoflove.org

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    Christina&Gene Jan 29 2019 6:36 pm

    Hello everyone, my stepson is 4 and was diagnosed with Duchenne last January. We are looking for families in Virginia to meet and share stories with, ask questions and just have fun with. We are so new to this and have so many questions. Wondering if we are doing the right thing, should we do more... that sort of thing. Please let me know if you are from Virginia or know families that are. Thank you so much.

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    Unclegeorge Jan 29 2019 5:57 pm

    My nephew is 14 years old with DMD. Are there any chat rooms that he could participate in with similar boys ?

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    Brian Wolf Jan 23 2019 6:06 pm

    We made it in print twice in the same month! This is really a revolutionary gadget our pulmonologist invented:

    https://www.cleveland.com/healthfit/2019/01/metrohealth-invention-will-help-neurological-patients-breathe-easier.html

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    Bruce Jan 21 2019 4:17 am

    Preclinical experiments with the Immunoproteasome Inhibitor ONX-0914 have found anti-inflammatory and anti-fibrotic benefit to dsytrophic skeletal and cardiac muscle. ONX--9914 is owned by Onyx Pharmaceuticals in San Fran which was acquired by Amgen.

    This is a recent publication on ONX-0914 improving cardiac function https://ajp.amjpathol.org/article/S0002-9440(18)30370-5/fulltext

    This 2016 publication documents skeletal muscle benefit https:Read more

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    debfos274@yahoo Jan 16 2019 4:46 pm

    My grandson is 9 with Duchene he is walking but barely..We have a small Toyota 2 door Scion..It is so difficult getting him in and out..We need a van for him that is converted for his stroller and scooter that he uses..I know they are very expensive and we are barely getting by..where can we start the procesd and how would we start the process to get some kind of assistance..credit is shot but I do have the Scion as a trade in..would have to be a…Read more

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    macdees Jan 15 2019 6:27 pm

    Hi, my name is Marissa and my son Luke was diagnosed with Duchenne when he was 3 and he just turned 5. We are about to put him on steroids and I suggested deflazacort because I had seen some positive findings for that steroid in recent studies. His doctor is pretty set on prednisone and I want to fight for the best possible treatment. If anyone can weigh in on their experiences with either steroid I would really appreciate it. Thank you!

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    Donna Joseph-Henry Jan 15 2019 3:29 pm

    Hi, my name is Donna. My son turned 10 last Monday and he was diagnosed 3 years ago. We live in Trinidad and Tobago where treatment is limited to prednisolone and physio therapy. I am desperately trying to find a lab that does the MLPA test for Duchenne. We really want to find out if he would be able to get the Exondys 51 treatment. My son’s name is Jeremiah. If anyone can direct me to a lab we would be so so grateful

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    Bruce Jan 12 2019 9:59 pm

    I want to thank Cure Duchenne, especially Bill Abernethy, Kerry Johnson, Joline Dalton and Brett Billmeyer for hosting the first Session in Little Rock, Arkansas. The event was a great success bringing together ten families most of whom had never met to learn about and discuss Duchenne. The room was packed, the food was great and the discussion was even better!

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