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What Are They Talking About . . .

when they say that the National Multiple Sclerosis Society is the only national voluntary Multiple Sclerosis organization that meets the standards of all major agencies that rate not-for-profit groups?

This is a story. It is the story of my discovery of that statement on chapter websites and my investigation of what it means.

The Original Story

The first part of this page is the original story that I wrote in October, November and December of 1999. After the original story, I provide two updates: one from August 2000 and another from March 2002.

The Discovery

While surfing the net, looking at National Multiple Sclerosis Society chapter websites for inclusion on these Multiple Sclerosis pages, I encountered a statement:

The National Multiple Sclerosis Society is the only national voluntary MS organization that meets the standards of ALL major agencies that rate non-profit groups.

This statement, or a variant of it appears on several chapter websites.

Here is one example:

• Iowa Chapter  (http://www.ianmss.org/Admin/aboutus.html)

Being mildly obsessive/compulsive and eternally curious, I wanted to know what this meant. I had several questions:

1. What are the "national voluntary MS organization[s]" that the statement refers to?
    
2. What are the "major agencies that rate non-profit groups" that the statement refers to?
    
3. Why is this so?
    
4. Is this an "official" statement by NMSS?
    
5. And, what does it mean? 

The Investigation

Asking the National Multiple Sclerosis Society

So, wanting answers, I wrote the National Multiple Sclerosis Society. 

Their response helped to answer the questions:

1. What are the "national voluntary MS organization[s]" that the statement refers to?
   
   (1) National Multiple Sclerosis Society,
   (2) Multiple Sclerosis Association of America, and
   (3) Multiple Sclerosis Foundation.
    
2. What are the "major agencies that rate non-profit groups" that the statement refers to?
    
   American Institute of Philanthropy (AIP)
   www.charitywatch.org
   
   Council of Better Business Bureaus (CBBB)
   www.bbb.org
    (Note: this function has now merged with the NCIB; see the March 2002 update below.]
   
   National Charities Information Bureau (NCIB)
   www.nationalcharities.org 
   [Note: this function has now merged with the CBBB; see the March 2002 update below.]

From there I began contacting the agencies and the other organizations.

Council of Better Business Bureaus

The Council of Better Business Bureaus was the first to respond. Seems that their information is maintained by the CBBB Philanthropic Advisory Service (PAS). They pointed me to their online Index of Philanthropic Advisory Service Reports at www.bbb.org/reports/charity.asp.

[Note: those URLs now forward to the new Give.org site. See the March 2002 update below.]

Going to that guide gave instant information:

1. National Multiple Sclerosis Society was listed and they met the CBBB Standards for Charitable Solicitations.
    
2. Multiple Sclerosis Association of America was not listed.
    
3. Multiple Sclerosis Foundation was listed. However, the listing said "Despite written Better Business Bureau requests in the past year, Multiple Sclerosis Foundation has not provided current information about its finances, programs, and governance." [quote extracted 25.Oct.1999]

Wow! Think about it. That much alone made the NMSS statement (probably) true. Even if the other two rating agencies rate all three organizations and "pass" all three organizations, the NMSS statement is still true.

The only thing now that could make it not true would be if the other two rating agencies didn't "pass" NMSS.

American Institute of Philanthropy

If you go to the American Institute of Philanthropy website at www.charitywatch.org you can click to the charity listing (www.charitywatch.org/list.html). The listing does not provide complete information but it did indicate:

1. National Multiple Sclerosis Society was listed and complied with requests for information (the open book symbol).
    
2. Multiple Sclerosis Association of America was listed and complied with requests for information (the open book symbol).
    
3. Multiple Sclerosis Foundation was listed but did not show the open book symbol and hence has not complied with requests for information.

Based on this information, it would appear that, best case, NMSS and MSAA would "pass" but MSF would not. NMSS was still two for two.

National Charities Information Bureau

[Note: the NCIB has now merged with the CBBB; the URLs below no longer function. See the March 2002 update below.]

Continuing on to the National Charities Information Bureau website at www.nationalcharities.org and you can click to the "Quick Reference Guide" (www.nationalcharities.org/qrguide.cfm). Once there I found:

1. National Multiple Sclerosis Society was listed (report 1110) and met all NCIB standards.
    
2. Multiple Sclerosis Association of America was listed but did not have a report . . . yet. The symbol ("report on update"), together with email communication from NCIB indicated that MSAA had provided information for it's first evaluation by NCIB. We'll look for that evaluation in the future.
     
3. Multiple Sclerosis Foundation was not listed at all.

Summary

So, what did I find out?

National Multiple Sclerosis Society

Council of Better Business Bureaus
Listed/Passed

American Institute of Philanthrophy
Listed/Complied

National Charities Information Bureau
Listed/Met All Standards

Multiple Sclerosis Association of America

Council of Better Business Bureaus
Not Listed

American Institute of Philanthrophy
Listed/Information Not Disclosed

National Charities Information Bureau
Listed/No Report Yet

Multiple Sclerosis Foundation

Council of Better Business Bureaus
Listed/Hasn't Complied With Information Requests

American Institute of Philanthrophy
Listed/Information Not Disclosed

National Charities Information Bureau
Not Listed

Where Now?

This left some further questions:

1. Is this an "official" statement of NMSS?
    
2. Why is this so?
    
3. What does it mean? 

The NMSS, which was kind enough to keep answering my questions, indicated that it is not an "official" statement, per se, but it is one they like to say. Interestingly enough, although it appears on chapter websites, it doesn't seem to appear anywhere on the National site. As far as whether it appears in their print material: they indicated that they were checking for me but I never heard back.

The other two questions will require responses from the other two Multiple Sclerosis organizations.

So far (in December 1999), despite a couple of inquiries, the most recent of which has alerted them to this page, there is still no response from them.

The Update Story: August 2000

In early August 2000, I began to review this information. Here is what I found:

National Multiple Sclerosis Society

Council of Better Business Bureaus
Listed/Passed

American Institute of Philanthropy
Listed/Complied

National Charities Information Bureau
Listed/Met All Standards

Multiple Sclerosis Association of America

Council of Better Business Bureaus
Listed (a change)/ Did not meet all standards
Only 41% of income spent on programs; at least 50% required. Report also indicates some government actions.

American Institute of Philanthrophy
Listed/Complied (a change)

National Charities Information Bureau
Listed/No Report Yet (still)

Multiple Sclerosis Foundation

Council of Better Business Bureaus
Listed/Hasn't Complied With Information Requests

American Institute of Philanthropy
Listed/Information Not Disclosed

National Charities Information Bureau
Not Listed

Summary of Changes from Dec 1999 to August 2000

• No changes for National Multiple Sclerosis Society
   
• Multiple Sclerosis Association of America became listed on CBBB, but didn't meet standards; it also complied with the request from AIP
   
• Multiple Sclerosis Foundation hasn't changed at all and still has no positive reports from any of the bureaus

The Update Story: March 2002

In early March 2002, I again reviewed the information. Here is the latest.

Agency Merger

The first thing I found was that the National Charities Information Bureau and the Council of Better Business Bureaus' Foundation and its Philanthropic Advisory Service had merged. The new domain is Give.org. This reduces the listing agencies from three to only two.

National Multiple Sclerosis Society

Give.org (the merger of the CBBB and the NCIB)
Listed/Passed

American Institute of Philanthropy
Listed/Complied

Multiple Sclerosis Association of America

Give.org (the merger of the CBBB and the NCIB)
Shows only that it has supplied current materials and is being evaluated. It has not yet "passed". Previously it was listed with CBBB, but did not meet standards; previously it was list without a report at NCIB.

American Institute of Philanthrophy
Listed/Complied

Multiple Sclerosis Foundation

Give.org (the merger of the CBBB and the NCIB)
Does not pass 2 standards; unable to evaluate 4 standards; passes remaining 21 standards. This is an improvement over the prior information, but is still not yet as complete as the National Multiple Sclerosis Society.

American Institute of Philanthropy
Listed/Complied

Summary of Changes from August 2000 to March 2002

• The CBBB and NCIB merged into one rating agency
   
• No changes for National Multiple Sclerosis Society
   
• Multiple Sclerosis Association of America is being reevaluated by Give.org
   
• Multiple Sclerosis Foundation passes some (21) of the standards of Give.org, but failed 2 and can't be evaluated on another 4;  It is also now listed as complying with the information request from AIP

Multiple Sclerosis Pages On
James S. Huggins' Refrigerator Door

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	This site complies with the HONcode standard for trustworthy health information of the Health On the Net Foundation: you can verify that here.

This site was a Medinex Certified Health Site and subscribed to the Medinex Code of Ethics. [NB: These links point to an archive of the actual page which is no longer available. The archive is hosted by the Internet Archive Wayback Machine. The assets of Medinex were sold in a Chapter 11 bankruptcy sale in March 2003. The future of the Medinex certification and code of ethics program is uncertain at this time but it is unlikely to continue. I maintain this information for reference.]