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    Useful Websites (posted by David Hosobuchi, 10/2006--Updated 1/2018)

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

    Only registered and activated users can see links., Click Here To Register...

    MS Organizations


    1. National Multiple Sclerosis Society (NMSS) Only registered and activated users can see links., Click Here To Register...1-800-344-4867

    2. Multiple Sclerosis Association of America (MSAA)
    Only registered and activated users can see links., Click Here To Register...
    1-800-532-7667

    3. MS Foundation
    Only registered and activated users can see links., Click Here To Register...
    1-888-673-6287

    4. MS Society - UK
    Only registered and activated users can see links., Click Here To Register...

    5. Multiple Sclerosis International Federation
    Only registered and activated users can see links., Click Here To Register...



    MRI



    1. Only registered and activated users can see links., Click Here To Register...

    2. Whole Brain Atlas:
    Only registered and activated users can see links., Click Here To Register...

    3. "How MRI Works:
    Only registered and activated users can see links., Click Here To Register...

    4. Only registered and activated users can see links., Click Here To Register...

    Information about MS



    1.
    Myelin Repair Foundation
    Only registered and activated users can see links., Click Here To Register...

    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. Cambridge University's Centre for Myelin Repair:

    Only registered and activated users can see links., Click Here To Register...

    A 2010 article about it:

    Only registered and activated users can see links., Click Here To Register...

    3. Medical News Today - Multiple Sclerosis News:
    Only registered and activated users can see links., Click Here To Register...

    4. Spasticity:

    Only registered and activated users can see links., Click Here To Register...

    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]

    Only registered and activated users can see links., Click Here To Register...

    6. Kurtzke Disability Scale:

    Only registered and activated users can see links., Click Here To Register...

    7. Possible link between Chlamydia pneumoniae and MS:

    Only registered and activated users can see links., Click Here To Register...

    8. Clinical trials

    Only registered and activated users can see links., Click Here To Register...

    Only registered and activated users can see links., Click Here To Register...

    9. Frequent updates with news about MS:

    Only registered and activated users can see links., Click Here To Register...

    10. Only registered and activated users can see links., Click Here To Register...

    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).

    11. General medical information:

    Only registered and activated users can see links., Click Here To Register...

    Only registered and activated users can see links., Click Here To Register...

    Only registered and activated users can see links., Click Here To Register...

    Only registered and activated users can see links., Click Here To Register...

    12. Only registered and activated users can see links., Click Here To Register... - A research group. As a member you fill out periodic questionnaires with 6-month updates so you and the researchers can use the de-identified data about use of various MS treatments, exercise, diet, supplements, etc.

    Treatments


    INJECTABLE DISEASE-MODIFYING DRUGS:

    Avonex (interferon beta-1a)
    Only registered and activated users can see links., Click Here To Register...

    Betaseron / Betaferon (interferon beta-1b) = Extavia
    Only registered and activated users can see links., Click Here To Register...

    Copaxone (glatiramer acetate) = Glatopa
    Only registered and activated users can see links., Click Here To Register...

    --also available in generic form as glatiramer acetate 40 mg or 20 mg through Mylan
    Only registered and activated users can see links., Click Here To Register...

    Extavia = Betaseron
    Only registered and activated users can see links., Click Here To Register...

    Glatopa = Copaxone (glatiramer acetate)
    Only registered and activated users can see links., Click Here To Register...

    Plegridy (pegylated interferon beta-1a)
    Only registered and activated users can see links., Click Here To Register...

    Rebif (interferon beta-1a)
    Only registered and activated users can see links., Click Here To Register...

    Zinbryta (daclizumab)
    Only registered and activated users can see links., Click Here To Register...

    INFUSED DISEASE-MODIFYING DRUGS:

    Lemtrada (alemtuzumab)
    Only registered and activated users can see links., Click Here To Register...

    Novantrone
    (mitoxantrone) (no official Website available)
    Only registered and activated users can see links., Click Here To Register...

    Ocrevus (ocrelizumab)
    Only registered and activated users can see links., Click Here To Register...

    Sometimes Rituxan (rituximab), a near-equivalent of ocrelizumab, is prescribed for off-label use:
    Only registered and activated users can see links., Click Here To Register...

    Tysabri (natalizumab)
    Only registered and activated users can see links., Click Here To Register...

    ORAL DISEASE-MODIFYING DRUGS:

    Aubagio (teriflunomide)
    Only registered and activated users can see links., Click Here To Register...

    Gilenya (fingolimod)
    Only registered and activated users can see links., Click Here To Register...

    Tecfidera (dimethyl fumarate)
    Only registered and activated users can see links., Click Here To Register...

    TREATMENT OF RELAPSES:

    IVMP (Methylprednisolone)

    High-dose oral prednisone

    ACTH (intramuscular adrenocorticotrophic hormone)

    Plasmapheresis

    IVIG (intravenous immunoglobulin)


    TREATMENT OF SYMPTOMS:

    There are too many treatments of various symptoms to list but one that has been attracting considerable attention recently has been Ampyra, which seems effective in improving walking in some people with MS.

    Ampyra (dalfampridine)
    Only registered and activated users can see links., Click Here To Register...

    ALTERNATIVE MS TREATMENTS:

    LDN (low-dose naltrexone)

    Only registered and activated users can see links., Click Here To Register...
    Only registered and activated users can see links., Click Here To Register...

    MARIJUANA (cannabis)

    Two articles about medical marijuana for MS--one from the National MS Society, one by Dean M. Wingerchuk, MD, of the Mayo Clinic:
    Only registered and activated users can see links., Click Here To Register...
    Only registered and activated users can see links., Click Here To Register...

    A BrainTalk administrator has set up a forum about marijuana for a large variety of medical conditions:
    Only registered and activated users can see links., Click Here To Register...


    Assistive Devices



    1. Only registered and activated users can see links., Click Here To Register... [United Spinal Association's guide to an extensive variety of aids]

    2. Only registered and activated users can see links., Click Here To Register...

    3. Only registered and activated users can see links., Click Here To Register...

    4. Scooters

    Only registered and activated users can see links., Click Here To Register...
    Only registered and activated users can see links., Click Here To Register...
    Only registered and activated users can see links., Click Here To Register...
    Only registered and activated users can see links., Click Here To Register...

    5. Other handicap supplies:

    Only registered and activated users can see links., Click Here To Register...

    Only registered and activated users can see links., Click Here To Register...

    6. Ramps:

    Only registered and activated users can see links., Click Here To Register...

    7. Cooling Aids:

    Only registered and activated users can see links., Click Here To Register...

    Only registered and activated users can see links., Click Here To Register...

    Only registered and activated users can see links., Click Here To Register...

    Only registered and activated users can see links., Click Here To Register...

    Only registered and activated users can see links., Click Here To Register...

    Only registered and activated users can see links., Click Here To Register...

    Only registered and activated users can see links., Click Here To Register...

    Only registered and activated users can see links., Click Here To Register... [cooling mattresses]

    Only registered and activated users can see links., Click Here To Register... [pump mister]

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

    Only registered and activated users can see links., Click Here To Register...

    The MS Foundation provides cooling aids in a program that runs from February 1 to June 1:

    Only registered and activated users can see links., Click Here To Register...

    8. Personal emergency response systems

    This 2014 article in Consumer Reports lists these and gives ratings:

    Only registered and activated users can see links., Click Here To Register...


    Assistance



    1. Exercise:

    Stretching exercises without assistance:

    Only registered and activated users can see links., Click Here To Register...

    Stretching exercises with assistance:

    Only registered and activated users can see links., Click Here To Register...

    2. Finding doctors (also contains a Canadian list):

    Only registered and activated users can see links., Click Here To Register...

    3. Disabled parents:

    Only registered and activated users can see links., Click Here To Register...

    4. Drug assistance programs:

    Only registered and activated users can see links., Click Here To Register...
    Only registered and activated users can see links., Click Here To Register...
    Only registered and activated users can see links., Click Here To Register...
    Only registered and activated users can see links., Click Here To Register...
    Only registered and activated users can see links., Click Here To Register...
    Only registered and activated users can see links., Click Here To Register...

    Only registered and activated users can see links., Click Here To Register...
    This is a fantastic organization that has helped me tremendously. I am also diabetic and the diabetic insulins are extremely expensive. They have arranged for Levemir and Novolog for me at little cost. When you go to their website it will say that they don’t cover people on Medicare but they do. They cover people with Medicare and private insurance. Fill out the paperwork and they will call you. Or you can call them at 1-866-722-6479. They work as a go-between with the drug manufacturers. They charge $50 per month for the first prescription and $15.00 for every prescription thereafter indefinitely.
    --posted by JTwin, 10/2/15

    Only registered and activated users can see links., Click Here To Register...
    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. Click "Drug Coverage (Part D) at the top, then click "Costs for Medicare drug coverage", from the drop-down menu.
    --posted by 'Lissa, 6/07

    Chronic Disease Fund

    Only registered and activated users can see links., Click Here To Register...
    Only registered and activated users can see links., Click Here To Register...

    5. Chronic illness--general support

    Only registered and activated users can see links., Click Here To Register... (a New York Times article by a rabbi diagnosed with central nervous system lupus, entitled "In My Chronic Illness I Found a Deeper Meaning")

    6. Travel assistance for the disabled:

    Only registered and activated users can see links., Click Here To Register...

    Only registered and activated users can see links., Click Here To Register... (Accessible parking and other mobile apps for daily use)


    Special thanks to everyone who contributed to this thread, especially David Hosobuchi, Mike Weins, Moderator #7, BBS1951, Cherie, Frog42, the late JTwin (Joy), 'Lissa, mmcc53, Salpalsally (Sally), and 0357. Please let me know by PM if there are any changes you think should be made.
    Last edited by Moderator #7; 01-26-2018, 07:10 PM.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

    #2
    The American Academy of Neurology offers a free subscription to Neurology Now, which often has articles about MS:

    Only registered and activated users can see links., Click Here To Register...
    Last edited by Moderator #7; 01-22-2018, 12:18 PM.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

    Comment


      #3
      Looks as if I neglected to include a Website about LDN (low dose naltrexone):

      Only registered and activated users can see links., Click Here To Register...

      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.
      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

      Comment


        #4
        More on LDN:

        Only registered and activated users can see links., Click Here To Register...Thanks to SalpalSally for posting this in a recent thread.
        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

        Comment


          #5
          A newer MS drug, Ampyra (dalfampridine), has been developed to help with walking:

          Only registered and activated users can see links., Click Here To Register...
          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

          Comment


            #6
            The current issue of Neurology Now has an informative article on drug payment assistance programs:

            Only registered and activated users can see links., Click Here To Register...
            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

            Comment


              #7
              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, 02:05 PM.
              SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

              Comment


                #8
                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
                Only registered and activated users can see links., Click Here To Register...

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

                1-800-SUICIDE
                Only registered and activated users can see links., Click Here To Register...

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

                1-800-964-2000
                Only registered and activated users can see links., Click Here To Register...
                SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

                Comment


                  #9
                  The MS Foundation offers a grant for temporary short-term home care assistance. More information and an application can be found Only registered and activated users can see links., Click Here To Register....
                  SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

                  Comment


                    #10
                    The MS Discovery Forum is a resource sponsored by the Accelerated Cure Project in conjunction with Massachusetts General Hospital:

                    Only registered and activated users can see links., Click Here To Register...

                    Though this site suspended operation on 6/21/16, it contains valuable information.
                    Last edited by Moderator #7; 01-22-2018, 02:01 PM.
                    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

                    Comment


                      #11
                      The MS Association of America has published an informative MS Research Update (March 2013):

                      Only registered and activated users can see links., Click Here To Register...
                      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

                      Comment


                        #12
                        Adaptive clothing resources

                        Here is a list of links to sources of adaptive clothing and accessories. Most offer both men's and women's clothes. Some will send a catalog on request. Most include shoes and intimate apparel but some don't.

                        IN THE U.S.:

                        Adaptations by Adrian
                        Only registered and activated users can see links., Click Here To Register...

                        Adaptive Clothing Showroom
                        Only registered and activated users can see links., Click Here To Register...

                        Buck and Buck
                        Only registered and activated users can see links., Click Here To Register...

                        Clothing Solutions
                        Only registered and activated users can see links., Click Here To Register...

                        Edna B. Fashions
                        Only registered and activated users can see links., Click Here To Register...

                        Independent You
                        Only registered and activated users can see links., Click Here To Register...

                        Wardrobe Wagon
                        Only registered and activated users can see links., Click Here To Register...

                        Wheelchair Jeans
                        Only registered and activated users can see links., Click Here To Register...

                        OUTSIDE U.S.:

                        Able 2 Wear
                        Only registered and activated users can see links., Click Here To Register...

                        Crea Vie: Adapted
                        Only registered and activated users can see links., Click Here To Register...

                        Geri Fashions
                        Only registered and activated users can see links., Click Here To Register...

                        Silvert's
                        Only registered and activated users can see links., Click Here To Register...

                        WheelieChix-Chic
                        Only registered and activated users can see links., Click Here To Register...
                        Last edited by Moderator #7; 01-22-2018, 02:06 PM.
                        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

                        Comment


                          #13
                          (MSAA) 2014 MS research update

                          The MSAA (Multiple Sclerosis Association of America) has put out a research update that gives a comprehensive rundown on existing and upcoming MS treatments:

                          Only registered and activated users can see links., Click Here To Register...
                          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

                          Comment


                            #14
                            Thanks so much Joan for all of your work to bring us this!!!

                            And thanks Dave.
                            Love, Sally


                            "The best way out is always through". Robert Frost






                            Comment


                              #15
                              Special thanks to Moderator 7 who helped me to fix up some links in this thread!
                              SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

                              Comment

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