Site-Wide Activity | DuchenneXchange
  • related content
    Profile Photo
    Tina Carson Dec 18 2018 1:57 pm

    Thank you Hawken for sharing your story with us in the curate section of this forum.
    I especially like reading this part: “I may have this disease, but I have so many other things that I can be thankful for, like my friends, my family and my education. We can triumph over death through Christ. My faith gives
    me strength to do whatever I can in the time I have.”

    + care    2
    + hugs
    0
    + thanks
    2
    + prayers
    0
  • related content
    Profile Photo
    josh Dec 17 2018 9:57 pm

    Symptoms of DMD

    http://ehealthhall.com/wp-content/uploads/2015/12/duchenne-muscular-dystrophy-symptoms.jpg

    + care    2
    + hugs
    0
    + thanks
    1
    + prayers
    0
  • related content
    Profile Photo
    josh Dec 12 2018 4:36 pm

    Off-label use of a gene therapy that restores the dystrophin reading frame doesn't seem to be too realistic, but the point she's trying to make deserves consideration.

    https://www.nature.com/articles/d41586-018-07642-0

    + care    1
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    josh Dec 12 2018 3:52 pm

    Hopefully, anyone prescribed valsartan is already well-aware of the recall announced by the FDA in July. The reason for the recall is seriously concerning. The manufacturer's blatant disregard for policies put in place to protect those who use their medicine is disgraceful.

    There are plenty of things I'd like to change concerning the drug development and approval process, but I've always been appreciative of the FDA's ability to regulate m…Read more

    + care    1
    + hugs
    0
    + thanks
    1
    + prayers
    0
  • related content
    Profile Photo
    CheckRare Dec 12 2018 2:40 pm

    CheckRare is partnering with BioNJ for their Third Annual Patient Adovacy Summit tomorrow in Summit, NJ.

    https://bionj.org/event/patient-advocacy-summit

    + care    1
    + hugs
    0
    + thanks
    1
    + prayers
    0
  • related content
    Profile Photo
    CheckRare Dec 12 2018 2:35 pm

    Chris Garabedian Discusses Interacting With Duchenne Patients and Advocates

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    Priya_ns Dec 11 2018 10:06 am

    Dystrophic arm muscles

    Normal biceps and biceps with muscular dystrophy

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    Priya_ns Dec 11 2018 10:06 am

    Dystrophic arm muscles

    Normal biceps and biceps with muscular dystrophy

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    Bruce Dec 7 2018 5:41 pm

    josh are you familiar with this publication which may have great relevance to older patients and the use of corticosteroids.

    Early onset of inflammation and later involvement of TGF-B in Duchenne muscular dystrophy

    "Abstract—Objective: To identify stage-specific induction of molecular pathology pathways in Duchenne muscular dystrophy
    (DMD). Methods: We performed mRNA profiling using muscles from fetopsies, infants (aged 8 to 10 months), and…Read more

    + care    2
    + hugs
    0
    + thanks
    1
    + prayers
    0
  • related content
    Profile Photo
    josh Dec 7 2018 2:50 pm

    I was super excited to see that Sarepta has a new study listed on ClinicalTrials.gov for SRP-9001, another gene therapy candidate! It was just posted today. They aren't recruiting yet, but I suggest doing some research right away to find out if it's something you'd be interested in and possibly qualify for. That way you'll be more prepared for when they start recruiting and be able to begin the process without delay.

    https://clinicaltrialsRead more

    + care    1
    + hugs
    0
    + thanks
    1
    + prayers
    0
  • related content
    Profile Photo
    Bruce Dec 7 2018 3:40 am

    Unfortunately it is paywalled but this is exciting.

    Evidence of muscle loss delay and improvement of hyperinsulinemia and insulin resistance in Duchenne muscular dystrophy supplemented with omega-3 fatty acids: A randomized study

    This study suggests that Ω-3LCPUFA (2.9 g/day) intake during 6 months likely slows the progression of muscle loss, decreases the fat mass, and reduces IR in boys with DMD. The findings of this study provide scientifi…Read more

    + care    3
    + hugs
    1
    + thanks
    2
    + prayers
    0
  • related content
    Profile Photo
    josh Dec 6 2018 7:38 pm

    Jett Foundation recently initiated a study titled, "Your Voice; Impact of DMD. A Qualitative Assessment of the Impact of DMD on the Lives of Families." One of the many reasons I believe it's very important for healthcare providers to understand the patient's perspective is because they are the only ones who know Duchenne intimately enough to determine whether or not an effect is meaningful. If you're interested in sharing your voice, you can…Read more

    + care    1
    + hugs
    0
    + thanks
    1
    + prayers
    0
  • related content
    Profile Photo
    josh Nov 29 2018 8:55 pm

    Please vote for PPMD as your favorite charity team in the Houston Marathon to help them win $25,000

    https://poll.fm/10170556

    + care    2
    + hugs
    0
    + thanks
    1
    + prayers
    0
  • rareRelated

  • related content
    Profile Photo
    Priya_ns Nov 29 2018 12:04 pm

    John Day, MD, PhD

    John Day is professor in the department of neurology at Stanford Children's Health. He received his education from University of Minnesota School of Medicine Registrar, Minneapolis, internship from Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, New York, and Residency form UCSF, Department of Neurology.

    Early on, he became interested in neurology to understand brain function, memory, and emotions. Howev

    Read more

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    Priya_ns Nov 29 2018 7:04 am

    https://www.duchennexchange.org/rarepoll-single/?poll=14

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    josh Nov 28 2018 1:03 am

    Please consider making a donation to CureDuchenne today; Giving Tuesday. Three VERY generous Duchenne families have committed a combined total of $500,000 in matching funds! You can make a donation online at:
    https://give.cureduchenne.org/fundraiser/1723845

    + care    1
    + hugs
    0
    + thanks
    1
    + prayers
    0
  • rareRelated

  • related content
    Profile Photo
    Tina Carson Nov 26 2018 1:00 am

    Would value anyone's opinion on this subject. How did you go about purchasing a wheelchair accessible van? Did you purchase the van & have it converted or did you buy it already converted. Who did you go through? Thanks

    + care    4
    + hugs
    0
    + thanks
    1
    + prayers
    1
  • related content
    Profile Photo
    josh Nov 19 2018 6:48 pm

    This week is one of the busiest travel times of the year. It can be especially difficult for families living with Duchenne. This article includes a few helpful tips to make travel easier. Do you have any suggestions to add?

    https://themobilityproject.com/articles/2016/04/01/wheelchair-travel-tips.aspx

    + care    6
    + hugs
    0
    + thanks
    3
    + prayers
    0
  • related content
    Profile Photo
    Priya_ns Nov 19 2018 11:15 am

    Marching Jack Wolf

    https://www.youtube.com/watch?v=jepv5pzRtRQ

    + care    0
    + hugs
    0
    + thanks
    0
    + prayers
    0
  • related content
    Profile Photo
    Clint M. Porter Nov 13 2018 9:03 pm

    This article from Nature highlights some of the difficult challenges with joining a clinical trial. We all have difficulties at home and adding additional efforts can be too much; however, many of us find hope and encouragement joining clinical trials.

    https://www.nature.com/articles/d41586-018-07351-8

    + care    7
    + hugs
    0
    + thanks
    4
    + prayers
    0
  • load more