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    CheckRare May 8 2019 1:17 pm

    https://checkrare.com/choosing-a-clinical-trial-for-duchenne-muscular-dystrophy-patients/

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    Cwinslow May 6 2019 3:08 pm

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    Jay Keller May 3 2019 9:28 pm
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    Jay Keller May 3 2019 9:28 pm

    https://www.findatopdoc.com/Healthy-Living/Explaining-Muscular-Dystrophy-to-Your-Family-and-Friends

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    josh Apr 29 2019 5:24 pm

    Many of us struggle trying to manage an endless number of responsibilities. Hawken learned the need to find balance early on. More importantly, he took action to achieve it. Sometimes that means making difficult decisions to reduce or eliminate unnecessary commitments that take up too much of our time and effort. Time is incredibly valuable and whether you care to recognize it or not, YOUR happiness is as well. A tool I've used to help obtain ba…Read more

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    CheckRare Apr 26 2019 3:13 pm

    https://checkrare.com/debra-miller-provides-an-overview-of-cureduchenne/

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    Kelli May Apr 26 2019 8:23 am

    Hi, my 19 year old son fell out off his scooter, fractured his femur and now has very elevated heart rate (sinus tachycardia) all day since. He's at the ICU at our children's hospital now. What could this be? A sign of FES?

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    Bwinslow Apr 21 2019 3:02 pm

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    josh Apr 16 2019 10:23 am

    This is an absolute must read! It's packed full with so much wisdom - seriously, from beginning to end. Thank you for sharing your experience and insight Hawken https://musculardystrophynews.com/2019/04/15/socializing-friendships-wisdom-confidence/

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    josh Apr 16 2019 8:31 am

    Wow! This is such a captivating story! The article provides a fabulous account of the history and development of the gene therapy program at Nationwide Children's Hospital.

    Did you find the story as interesting as I did? Please let me know with a comment below.

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    josh Apr 15 2019 4:15 pm

    Sarepta's Route 79 scholarship application deadline is approaching soon. This is an amazing opportunity to receive up to $5,000 towards a college education! Applicants must submit an essay (less than 1,000 words) by April 30th. Visit https://www.sarepta.com/route79 for complete details.

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    Unclegeorge Apr 14 2019 8:34 am

    I am looking to buy a vehicle to accommodate my nephews DMD. Does anyone have any recommendations or experience both positive and negative .

    Thank you ,

    Bill

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    Karismara Apr 13 2019 12:07 am

    So I took my son to his neuromuscular appointment on Tuesday and they took blood for the genetic test. Are next appointment is on June 11, at 2:30 and that when we get the test result. The wait sucks.

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    dlowrls Apr 12 2019 3:09 pm

    Exon Skipping Explained from Sarepta Therapeutics

    https://player.vimeo.com/video/238953537

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    dlowrls shared Clint M. Porter's post Apr 11 2019 12:26 pm

    This long-term study of CRISPR is very interesting and helpful...

    https://scienceblog.com/506209/single-crispr-treatment-provides-long-term-benefits-in-mice/

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    Çınar Manolya Kıvanc Alay Apr 3 2019 3:24 pm

    Hii my baby is 23 montly and 45-50 deletion,we wany use #exondys51 but not in my country. can I ask you for something?
    babe could use the drug. according to this result I will request the drug , we are suitable for the drug and my baby @cinaralpalay denova mutation my doc. told me you re lucky because disease progresses slowly in mutated patients. Finally, How do you supply the drug,how much for 13 kg. Thank you so much.🙏🙏🙏…Read more

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    Paola Palma Apr 3 2019 11:01 am

    hi, i want to know if anyone knows or does any treatment for Duchenne other than corticosteroids. Or if someone, who participated in clinical trials can tell me some good experience in them.

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    ME Howard Apr 2 2019 2:12 pm

    I have a 47 year old brother with DMD who lives in Illinois at home with my 84 year old mother who suffers from dementia and uses a walker. My dad who was the primary coordinator of their care passed away a year ago but luckily, we had live in care in place. My brother is on a ventilator, has a cath bag, and requires a lot of physical care. Our difficulty has been this: Illini Care, program for disabilities, allots a certain number of hours for h…Read more

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    AmyRossCavalier Mar 30 2019 5:02 pm

    https://www.cbc.ca/news/canada/toronto/koolway-ports-george-brown-outerwear-people-with-disabilities-1.5062756

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    Karismara Mar 26 2019 9:17 pm

    I've been just waiting for the insurance letter for the genetic test to come so I can get my boy tested. Also I just give birth to a health baby girl on 3/2/19. I've just been hoping the genetic test letter would come in the mail already. It's been hard just wait to find out if my boy has DMD. My boy been walking more and more a not hold on to things. My next neruomuslce doctor appointment is on April 9th.

    My nephew maybe have it too. …Read more

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