MS Breakthrough
 

The link wouldn't post, but it's on google: MS Breakthrough?
February 10, 2009 2:31 PM

Edwin McClure contracted Multiple Sclerosis as a high school senior but after undergoing new stem cell treatments, his family says he is "cured." Debbye Turner Bell reports.

If you have No Prescription Coverage...
 

Explaining MS to children:
 

If you have small children, or grandchildren, and have been looking for an easy way to explain MS to them, try this website from The National MS Society. It's interactive and has been formulated especially for the little ones.

Keep S'myelin: A Fun Resource for Kids about MS

http://main.nationalmssociety.org/KS...ue1/index.html

Resources, Useful Websites & Clinical Trials
 

I inquired about possible assistance from the NMSS for medical equipment and received this very helpful email. It has lots of assistance options and links with valuable information. I wanted to share it here so others could take advantage of the help offered. Here it is:

There are a variety of resources that might be able to help fund a piece of assistive technology or durable medical equipment, like a rollator. I have included information about the process and possible funding sources in the email below in addition to including information about our financial assistance application.

PROCESS:

Please see these articles for some basic information about theprocess:

Finding the Right Stair Lift, Ramp, and Wheelchair : National MS Society

Affording Stair Lifts, Ramps, and Wheelchairs : National MS Society


POTENTIAL FUNDING RESOURCES:

NATIONAL MS SOCIETY’S FINANCIAL ASSISTANCE PROGRAM:

The National MS Society has a limited financial assistance program that can be used for an MS-related expense, like assistive technology or durable medical equipment. We ask that you access your health insurance and community resources first, but please feel free to apply to our program if you need assistance. I have attached our cover letter and application above. Note: you will want to return the completed application to the contact information listed on the cover letter. Do not return it to me, as I am in a different office.


COMMUNITY RESOURCES:

Here is information about four organizations that are often able to help:

Multiple Sclerosis Foundation (MSF)
6520 N. Andrews Avenue
Fort Lauderdale, FL 33309
Phone: 888-673-6287
Fax: 954-351-0630
Email: support@msfocus.org
Website: http://www.msfocus.org/

Eligibility:
Persons with MS who have need for financial assistance for equipment or services. An application is required for most of MSF’s grant programs.
Services Information:
The MSF offers the following financial assistance programs:

• Assistive Technology Program: http://www.msfocus.org/Assistive-Tec...y-Program.aspx
  • This program links individuals with MS to a wide range of devices that allow them to function more independently in activities of daily living.
  • MSF may provide, locate, or help with funding for needed AT device.
  • See website for examples of eligible devices.
• Brighter Tomorrow Grant: http://www.msfocus.org/Brighter-Tomorrow-Grant.aspx
  • Applications/essays are accepted July 1 – September 1 each year.
  • Application must be submitted with an essay from the applicant. (See website for details.)
  • Grant of up to $1000 for items like ramps, wheelchairs, walkers, eyeglasses, home modifications

MS Association of America:
706 Haddonfield Road
Cherry Hill, NJ 08002
Phone: 800-532-7667
Fax: 856-661-9797
Email: msaa@msassociation.org
Website: http://msassociation.org/
Eligibility:
Persons with MS who need financial assistance for cooling vests, MRI exams and
personal use equipment. Also serves people who need an initial MRI to establish a
diagnosis of MS. An application is required for each MSAA grant program.
Services Information:
The MSAA offers the following financial assistance programs:

• MSAA Equipment Distribution Program: http://www.msassociation.org/programs/equipment/
  • Program provides each applicant with up to 3 free products designed to improve their safety, dignity, mobility and independence.
  • Applications are accepted throughout the year. (See website for details.)
  • Applicant must submit an Equipment Distribution Program Application along with a note from the treating doctor confirming the applicant’s MS diagnosis.
  • Items distributed through the program include a variety of bathroom & home safety products such as shower chairs, grab bars and hand rails as well as mobility devices including canes, walkers and wheelchairs.
  • See application for descriptions of equipment offered.

Friends of Man
P.O. Box 937
Littleton, CO 80160
Phone: 303-798-2342
Website: http://friendsofman.org/

Eligibility:
Applications are accepted from U.S. residents and must be submitted by an agency on behalf of the individual. Rent, utilities, deposits, past due bills and reimbursement are not eligible requests for this program.

Services:

• Serves persons in need of financial assistance for temporary childcare, durable medical equipment, eyeglasses, hearing aids, dental needs (including dentures), prostheses, medicine, and more.
• All requests are considered on a case-by-case basis.

ModestNeeds.Org
115 E 30th Street, FL1
New York, NY 10016
Phone: 212-463-7042
Website: http://www.modestneeds.org/help/grants/

Eligibility:
§ At least 18 years of age
§ Legal resident of the United States or Canada
§ Intend to apply for assistance either for yourself, or for a person living in your home
§ Household has at least one active bank account
§ Have regular access to a computer and the Internet and can check your email the Modest Needs website daily for the entire time that your application is active;
§ Have the ability to access either a scanner or a fax machine at my home, my place of business, or a shop like FedEx Business or Office Max for long enough to send the documentation that Modest Needs will request from me during the grant application process to Modest Needs' office for evaluation; and, if you rent (rather than own your residence)
§ Household has a legal lease that my landlord and a member of your household both have signed. This lease shows the monthly cost of your apartment, whether or not you pay all of this amount.

Services Information:
Offers the following types of grants:

• Self-Sufficiency Grants
• New Employment Grants
• Independent Living Grants
• Bridge Grants

I hope this information is helpful. If you have any other questions or concerns, please do feel free to contact us by phone at 1-800-344-4867 or by email at contactusnmss@nmss.org to have an MS Navigator assist you.

To help pay for medications
 

Some of this is a repeat:

Here are some companies that might be useful to help pay for medications:
Montel Williams MS Foundation: (888) 324-2773
Partnership For Prescription Assistance: (888) 477-2669
Wellness 2 Wellness: (866) 317-2775
Together RX Access: (800) 444-4106
The Commonwealth Fund: (212) 606-3800
The Medicine Program: (800) 921-0072
NeedyMeds: (978) 865-4115
National Organization of Rare Disorders (NORD): (203) 744-0100
Rx Council: (866) 794-3571
Alternative Funding Group: (866) 426-2906
Patient Access Network: (866) 316-7261
Bridges to Access: (866) 728-4368
Rx Outreach: (800) 769-3880
Look above in this thread for the phone numbers to the DMDs' patient assistance programs.

New info on JC virus
 

I just saw my neurologist today (every 6 months since I'm on Tysabri). He is at a big medical school and does research as well. He has been reading research on copper and zinc deficiencies which are associated with demyelinating disorders.

He and the NIH are doing research on the JCV antibody test. They used to think the false negative rate was 2.5 %. Now it could be more like 10-12%. In other words, some people who were negative are becoming positive (he didn't say how many cases). They are trying to figure out why this is happening. He's now adding a PCR test for the virus with every infusion (I get them every 8 weeks) which looks for JC virus DNA in your blood. It's a way, on an offhand chance, to pick up the virus in your body if you have a false negative situation going on.

They also think the problem might be there is more than one strain of JC virus so the assay test might not be picking up the strain you have, or maybe your body doesn't produce the antibodies in a great enough number to register on the assay (test). They think that maybe only one particular strain causes PML. He said it will take a year for them to sort all of this out.

He said this spring they refined the JCV antibody test so I will get the new one at my next infusion. I think it has been refined to catch some of the false negatives. I can't remember how exactly the test has been made better.

Thought I would share!

Great, informative site for both newbies and experienced MSers. Lots of information on this site and I recommend it to anyone seeking more info on MS.

http://my-ms.org/ms.htm

A good article about LPs, from Web MD.....
www.webmd.com/multiple-sclero...13_promo_1&mb=


And Evoked Potentials...

http://www.webmd.com/multiple-sclero...otential-tests

http://www.neurology.org/content/82/...t/P3.155.short

Study has been going approx. 1 year,

Pilot Trial Of Recombinant Human Growth Hormone For Remyelination In Multiple Sclerosis: Current Status And Preliminary Safety Analysis (P3.155)

Dr. Then Bergh has received personal compensation for activities with Biogen Idec, Novartis, Merck Serono, and Sanofi-Aventis Pharmaceuticals Inc. as a speaker or member of an advisory board. Dr. Then Bergh has received research support from Bayer Schering, Novartis and Teva Neuroscience.

In other words, every large Pharma is interested in the outcome of this one.. I am too.