Results 1 to 10 of 32

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

Threaded View

  1. #1
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,758
    Blog Entries
    11

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

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

    http://www.braintalkcommunities.org/...ead.php?t=1742

    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) http://www.nmss.org
    1-800-344-4867

    2. Multiple Sclerosis Association of America (MSAA)
    http://www.msaa.com
    1-800-532-7667

    3. MS Foundation
    http://www.msfocus.org/
    1-800-225-6495

    4. MS Society - UK
    http://www.mssociety.org.uk/

    5. Multiple Sclerosis International Federation
    http://www.msif.org/en/


    MRI:

    1. http://www.imaginis.com/multiple-scl...s-in-the-brain

    2. Whole Brain Atlas:
    http://www.med.harvard.edu/AANLIB/home.html

    3. "How MRI Works:
    http://www.howstuffworks.com/mri.htm

    4. http://www.radiologyassistant.nl/en/4556dea65db62

    Information about MS:

    1.
    Myelin Repair Foundation
    www.myelinrepair.org

    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):

    [CENTER]
    http://www.bbc.co.uk/news/health-11913689

    3. Medical News Today - Multiple Sclerosis News:
    http://www.medicalnewstoday.com/sect...ple_sclerosis/

    4. Spasticity:

    http://www.emedicine.com/PMR/topic177.htm

    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]

    http://narcoms.org/

    6. Nutrition - MS connection:

    http://www.direct-ms.org

    7. Kurtzke Disability Scale:

    http://www.mult-sclerosis.org/expand...atusscale.html

    8. Possible link between Chlamydia pneumoniae and MS:

    http://www.cpnhelp.org

    9. Clinical trials

    http://www.clinicaltrials.gov/ct2/re...iple+sclerosis

    http://www.centerwatch.com/ctrc/MSFocus/index.html

    10. Frequent updates with news about MS:

    http://www.stusviewsandmsnews.blogspot.com/

    11. http://www.ncbi.nlm.nih.gov/

    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:

    http://www.medicinenet.com/script/main/hp.asp

    http://www.mayoclinic.com/

    http://www.webmd.com/

    http://www.wellnessletter.com/

    13. Differential diagnosis (2007 article):

    http://www.neurology.wisc.edu/public...07/Neuro_2.pdf

    14. http://www.healthcommunities.com/mul...ew-of-ms.shtml
    Treatments:
    1.ABCR (disease-modifying injectable) drugs:

    Avonex

    http://www.avonex.com/

    Betaseron/Betaferon

    http://www.betaseron.com/

    Extavia http://www.extavia.com/index.jsp?use...76892988755402

    Copaxone (glatiramer acetate) http://www.sharedsolutions.com/

    Rebif
    http://www.rebif.com/pages/home
    -----------------------------------------------------------------------------------
    2. Tysabri

    http://www.tysabri.com/


    ___________________________________________

    Wheelchairs and other assistive devices:

    1. http://www.newmobility.com/

    2. http://www.wheelchairnet.org/index.html

    3. http://www.wheelchairjunkie.com

    4. scooters

    http://www.scooterlink.com
    http://www.spinlife.com
    http://www.blvd.com/Scooters_and_Scooter_Lifts/Ramps/
    http://www.enablemart.com

    Great place to look for scooter. Beware of buying from this place, though:
    http://www.discountscooters.com


    (posted by mmcc53, 10/06)


    5. Other handicap supplies:

    http://www.healthcraftproducts.com

    http://www.dynamic-living.com

    6. Ramps:

    http://www.discountramps.com/

    7. Accessibility:

    http://bikenct.nationalmssociety.org...Stretching.pdf

    http://www.nationalmssociety.org/Nat...ted-Manual.pdf

    8. Assistive Device Lemon Law:

    http://www.ohiolemonlaw.com/adll-sit...tate_laws.html

    9. Cooling vests:

    http://www.steelevest.com

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

    http://www.msassociation.org/programs/cooling/

    10. Emergency call button:

    http://www.linktolife.com

    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 necklace...you 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





    Assistance
    1. Exercise:

    Stretching Exercises [without assistance]:
    http://www.nationalmssociety.org/download.aspx?id=331

    Stretching Exercises w/Helper:
    http://www.nationalmssociety.org/download.aspx?id=332
    2. Finding doctors (also contains a Canadian list):
    http://clams.org/goodocs.html

    3. Disabled parents:

    http://lookingglass.org/index.php

    4. Drug assistance programs:

    http://www.pparx.org
    http://www.rarediseases.org
    http://www.themedicineprogram.com
    http://www.needymeds.org/

    -------------------------------------------------------------------------------
    5.
    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





    6.
    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 Medicare.gov

    http://www.medicare.gov/default.aspx

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



    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.

  2. The following user says "thanks"


Similar Threads

  1. Replies: 2
    Last Post: 12-05-2011, 10:16 PM
  2. Fur Babies Album (posted by AGR, 11/06)
    By agate in forum Multiple Sclerosis
    Replies: 2
    Last Post: 09-14-2011, 01:36 PM
  3. surgery-muscle lengthening == c/'p from archives, posted by 'grace'
    By Mother's Heart in forum Child Neurology
    Replies: 6
    Last Post: 08-20-2011, 06:50 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.