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Thread: Useful Websites (posted by David Hosobuchi, 10/06)

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    Default Useful Websites (posted by David Hosobuchi, 10/06--updated 8/11)

    Here is the link to the complete thread on the old board:

    Below is an abridged version giving only current links that are still working. I've omitted most discussions, comments, and a few less relevant posts.
    MS organizations:
    1. National Multiple Sclerosis Society (NMSS)

    2. Multiple Sclerosis Association of America (MSAA)

    3. MS Foundation

    4. MS Society - UK

    5. Multiple Sclerosis International Federation



    2. Whole Brain Atlas:

    3. "How MRI Works:


    Information about MS:

    Myelin Repair Foundation

    The Myelin Repair Foundation is a California-based non-profit medical research foundation dedicated to accelerating basic medical research into myelin repair treatments that will dramatically improve the lives of people suffering from multiple sclerosis.

    The Myelin Repair Foundation was created by Scott Johnson, an experienced biotechnology CEO who was diagnosed with MS in 1976. At that time Scott’s physician told him there would be a cure in 30-50 years. If Scott were diagnosed today, he would be told the same thing. With the billions of government and non-profit dollars spent on basic medical research each year, Scott wondered, “Where are the cures?

    His solution is the Accelerated Research Collaboration model, whereby the Myelin Repair Foundation has forged partnership agreements among medical researchers at Stanford University, the University of Chicago, Northwestern University and Case Western Reserve University. Under those agreements, leading researchers are sharing data and working together to accelerate studies that could lead to a cure for MS – and inevitably breakthroughs that arise for other autoimmune diseases.

    The Accelerated Research Collaboration model is cutting in half the time to make basic scientific discoveries and shepherding those discovers into commercial development. Scott’s entrepreneurial quest for a cure for MS has been recognized in the The Wall Street Journal, BusinessWeek and Scientific American. Further, more than 60 different disease research organizations have expressed an interest in the model and how it might be used to leverage their own research investments and bring treatments to patients who can’t afford to wait.

    Justine Lam
    Internet Strategist
    Myelin Repair Foundation
    2. "Study offers hope of 'repairing' MS damage" (BBC News, December 2010):


    3. Medical News Today - Multiple Sclerosis News:

    4. Spasticity:

    5. NARCOMS (North American Research Committee on Multiple Sclerosis) - a global MS registry
    • NARCOMS is a non profit project of the Consortium of Multiple Sclerosis Centers and is supported by grants and in-kind services from:
      • United Spinal Association,
      • Paralyzed Veterans Association (PVA), and the
      • National Multiple Sclerosis Society.
      • Additional support has been provided by unrestricted grants from the following pharmaceutical companies: Berlex, Biogen, Immunex, Serono, and Teva Neuroscience.

    [from the NARCOMS Website]

    6. Nutrition - MS connection:

    7. Kurtzke Disability Scale:

    8. Possible link between Chlamydia pneumoniae and MS:

    9. Clinical trials

    10. Frequent updates with news about MS:


    If you register on this US National Library of Medicine site you can sign up for regular e-mails containing abstracts of the most recent research on MS (or any other topics you choose).

    12. General medical information:

    13. Differential diagnosis (2007 article):

    1.ABCR (disease-modifying injectable) drugs:




    Copaxone (glatiramer acetate)

    2. Tysabri


    Wheelchairs and other assistive devices:




    4. scooters

    Great place to look for scooter. Beware of buying from this place, though:

    (posted by mmcc53, 10/06)

    5. Other handicap supplies:

    6. Ramps:

    7. Accessibility:

    8. Assistive Device Lemon Law:

    9. Cooling vests:

    The MSAA offers free cooling equipment to persons with MS who qualify. To find out more, go to:

    10. Emergency call button:

    This is a good, reputable company...will mail you quickly the setup and waterproof wristband with an emergency call button (looks like a watch) or order a can be heard anywhere in your house or porch. Will call your local ambulance service if it's required.

    They keep on file a list of all medication that you can update as needed. They know your family doctor's name and number as well as your hospital's number. They too can be told of an extra key location should you have one outside.

    Link to Life [Toll free: 855-742-5585]

    We've been very happy with them.
    --posted by 0357, 8/07

    1. Exercise:

    Stretching Exercises [without assistance]:

    Stretching Exercises w/Helper:
    2. Finding doctors (also contains a Canadian list):

    3. Disabled parents:

    4. Drug assistance programs:

    Wanted to pass along a phone number should you be without prescription insurance ... 1-888-477-2669--Partnership for Prescription Access. They will direct you to the drug company that carries the drug you need. For all drugs you order a 3 or 6 month supply w/refills.

    If you need Wellbutrin, call 1-866-728-4368.

    Mirapex, 800-556-8317.

    Baclofen, Klonopin & Xanax and a number of other drugs comes from Rx Outreach if I remember correctly; but most importantly it includes the middle income people. 1-800-769-3880.

    You can even have Part D coverage which doesn't cover Xanax or Klonopin and get these drugs if your income allows; 1-800-769-3880.

    Provigil, 800-675-8415 (I have yet to get through; always get a busy signal.)

    Help from MS disease modifying drugs:

    AVONEX: 1-800-456-2255

    BETASERON: 1-877-836-5724

    COPAXONE: 1-800-887-8100

    NOVANTRONE: 1-877-447-3243

    REBIF: 1-877-447-3243

    TYSABRI: 1-800-456-2255

    I have tried to post National MS Society's sites but they keep changing; the best I can recommend is go to their main site and use their search engine to find information you are looking for.
    --posted by 0357, 10/09

    Medicare Part D - help with doughnut hole expenses

    There's a ... web tool that will help you determine if a Prescription Assistance Program (PAP) could help you with the expenses you incur for drugs when the Medicare part D "doughnut hole" kicks in and isn't covering drugs:

    1. Go to

    2. Click on [Coverage Gap Information]...
    --posted by 'Lissa, 6/07
    7. Travel assistance for the disabled:

    This thread can be edited for the next 72 hours. Please let me know of any changes that need to be made. Of course anyone can add posts with additional information to this thread at any time.

    Special thanks to the contributors to the original thread whose information is included here:

    0357, Ascott, Bill[uk], bluesky63, calcal, euphoniaa, 'Lissa, moose53, mmcc53, MRF_Justine, lady_express_44, skm, Greg B 777, thumbsup, notasperfectasyou, SalpalSally, Annie1234.
    Last edited by Moderator #7; 12-28-2014 at 03:47 PM. Reason: updated link in area 6 "ramps" ... old links are being turned off soon.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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