Page 1 of 3 123 LastLast
Results 1 to 10 of 29

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

  1. #1
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    5,718
    Blog Entries
    12

    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.
    There is nothing like staying at home for real comfort.
    --Jane Austen, Emma

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

  2. The following user says "thanks"


  3. #2
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    5,718
    Blog Entries
    12

    Default

    The American Academy of Neurology offers a free subscription to Neurology Today, which often has articles about MS:

    http://patients.aan.com/
    There is nothing like staying at home for real comfort.
    --Jane Austen, Emma

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

  4. #3
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    5,718
    Blog Entries
    12

    Default

    Looks as if I neglected to include a Website about LDN (low dose naltrexone):

    http://www.lowdosenaltrexone.org/

    I apologize! The bits of text had a way of shifting around as I was doing the editing, and it may have dropped out of the message window and I didn't notice.
    There is nothing like staying at home for real comfort.
    --Jane Austen, Emma

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

  5. #4
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    5,718
    Blog Entries
    12

    Default

    Here are some additions to the list of Websites for MS drugs:

    Gilenya - Patient Support:

    877-408-4974
    http://www.gilenya.com

    Rebif - MS LifeLines

    877-477-3243
    [URL="http://www.MSLifeLines.com"]http://www.MSLifeLines.com
    Last edited by Moderator #7; 12-28-2014 at 03:04 PM.

  6. #5
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    5,718
    Blog Entries
    12

    Default

    More on LDN:

    http://www.ldnscience.org/

    Thanks to SalpalSally for posting this in a recent thread.

  7. #6
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    5,718
    Blog Entries
    12

    Default

    A newer MS drug, Ampyra (dalfampridine), has been developed to help with walking:

    http://ampyra.com/home/?ssva_vid=469...tm_term=Ampyra
    There is nothing like staying at home for real comfort.
    --Jane Austen, Emma

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

  8. #7
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    5,718
    Blog Entries
    12

    Default

    The current issue of Neurology Now has an informative article on drug payment assistance programs:

    http://journals.lww.com/neurologynow...ney_on.19.aspx
    There is nothing like staying at home for real comfort.
    --Jane Austen, Emma

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

  9. #8
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    5,718
    Blog Entries
    12

    Default

    The most recent Rocky Mountain MS Center eMSNews contains up-to-date information about some of the programs for assistance in paying for MS drugs:

    Copaxone Patient Assistance Program – Teva Pharmaceuticals

    In June Teva implemented a new co-pay solution for patients with commercial health insurance (non-Medicaid & non-Medicare) that helps reduce co-pays to $35 per month, out of pocket. There are no income qualifications, but patients need to have a co-pay of $535 or less. For uninsured patients Teva offers assistance in partnership with AssistRX. There are also assistance programs for people using Medicare Part D. To learn about any of these options, contact Shared Solutions at 1-800-887-8100

    Betaseron Patient Assistance Program – Bayer Pharmaceuticals

    For patients with commercial health insurance, Bayer usually pays 100% of the co-pay. Patients will continue to receive Betaseron for free as long as they are on the therapy. They do not have to re-enroll or reapply after one year. The only time they have to re-enroll is if their insurance changes. The maximum per year patient benefit is $9500. There are no income qualifications for this program. Through another payment assistance program, uninsured or underinsured patients will pay no more than $50 dollars per month. To learn about any of these options, contact BetaPlus at 1-800-778-1467


    Ampyra Patient Assistance Program – Acorda Therapeutics

    Patients with commercial insurance can sample Ampyra for free for 60 days. After that, if the medication helps, patients will only pay $40 of whatever their co-pay is. Medicare patients can apply for patient assistance, which is funded by Acorda and is based on income levels. If the patient qualifies, Ampyra is free for that calendar year. Colorado Medicaid covers Ampyra, making it free to Medicaid patients with MS and walking difficulty.

    Rebif Patient Assistance Program -- EMD Serono, Inc. and Pfizer Inc

    The MS LifeLines Reimbursement Specialists can answer questions on topics including enrollment, benefits and prior authorization requirements for a variety of health insurance and prescription drug programs. If you currently have health insurance, they'll work with you to help you get the best available coverage under your insurance plan. If you have questions about affording your therapy or if you have no insurance or limited insurance, MS LifeLines Reimbursement Specialists will help get you connected with the appropriate assistance programs, as well as appropriate state or federal programs. Call MS LifeLines Access Made Simple at 1-877-447-3243


    Avonex and Tysabri Access Programs - Biogen Idec

    Biogen offers patient assistance through its ActiveAccess Services. This program offers insurance counseling to help patients obtain adequate coverage, along with help navigating changes due to the new healthcare reform law. It can also include $10 Copay Programs with no income requirements and no enrollment time limit for eligible patients, infusion cost assistance program for eligible patients, and free medication for eligible patients in need. To learn more about ActiveAccess or the cost and insurance assistance programs, call an ActiveSource Coordinator at 1-800-456-2255.


    Gilenya - Novartis Pharmaceuticals Corporation

    If you are unable to afford Gilenya or don't have health coverage, the Novartis Patient Assistance NOW might be able to help. If you have commercial health insurance, the Gilenya Go Program will cover your out-of-pocket costs up to $800 per prescription benefit and $10,400 per calendar year. This co-pay assistance program is available for eligible people who have been prescribed Gilenya, regardless of income level or medical history. The co-pay assistance program will also cover up to $600 per year for additional medical expenses associated with Gilenya treatment. To learn more about Patient Assistance NOW or the Gilenya Go Programs, call 1-800-445-3692.


    Ask Your Doctor for Help

    Lastly, let your doctor know that the cost of medication is an important consideration for you. He or she might be able to suggest an equivalent medication, have a staff member help you fill out paperwork to one of the patient assistance programs or know of another solution, such as an open-label clinical trial.
    Last edited by Moderator #7; 12-28-2014 at 03:05 PM.

  10. #9
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    5,718
    Blog Entries
    12

    Default

    Mental health Websites:

    National Suicide Prevention Lifeline - a free, confidential 24-hour hotline for anyone in suicidal crisis or emotional distress.

    1-800-273-TALK
    http://www.suicidepreventionlifeline.org

    Hopeline - free confidential 24-hour hotline for anyone in a suicidal crisis or emotional distress

    1-800-SUICIDE
    http://www.hopeline.com

    With the American Psychological Association Psychologist Locator you can find practicing psychologists in your area:

    1-800-964-2000
    http://locator.apa.org
    There is nothing like staying at home for real comfort.
    --Jane Austen, Emma

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

  11. #10
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    5,718
    Blog Entries
    12

    Default

    A convenient way to find a neuro in your area (from Neurology Now):

    https://patients.aan.com/findaneurologist/

    You fill in your location and are taken to an alphabetical list of neuros in the area. Clicking on a doctor's name leads to the address and the date when the doctor joined the AAN.
    Last edited by Moderator #7; 12-07-2016 at 08:44 PM.
    There is nothing like staying at home for real comfort.
    --Jane Austen, Emma

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

Page 1 of 3 123 LastLast

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.