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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:

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 My Site

Multiple Sclerosis and MeMultiple Sclerosis and My Life: Information about how Multiple Sclerosis has affected me and why I decided to create these pages. 

Frequently Asked Questions (FAQ)Frequently Asked Questions (FAQ) 

Multiple Sclerosis LinksMultiple Sclerosis Links and Resources: A boatload of links. Wazillions of links. And a few more. But . . . Even though there are many links here, these are not all the links. Be sure to check the other sections for the specialty links. 

Local and Non-US OrganizationsLocal and Non-US Organizations: Includes state by state listings of local organizations, including the chapters of the National Multiple Sclerosis Society. 

Chat, Forums and eMail Discussion Groups 

Commercial Sites and Commercial JournalsCommercial Sites and Commercial Journals 

General Medical Sites and Other ResourcesGeneral Medical Sites and Other Resources: Not specifically related to Multiple Sclerosis, but offering general medical information. Many feature search engines to locate Multiple Sclerosis information or Multiple Sclerosis sections within their site. 

Personal StoriesPersonal Stories: Personal websites featuring the webmaster's personal experience with Multiple Sclerosis. Most also include some links to other Multiple Sclerosis resources. 

Who Are the People With Multiple Sclerosis?Books: Books about Multiple Sclerosis (like you really needed that description). 

Who Are the People With Multiple Sclerosis?Who Are the People With Multiple Sclerosis?: A moving essay by Virginia Sanchez (used with permission). 

Multiple Sclerosis and ChildrenMultiple Sclerosis and Children: Special information about MS in children and why I hope to honor them with my site.


Who Are the People With Multiple Sclerosis?Guest Article: Social Security and Multiple Sclerosis (MS) - Applying for Social Security Disability with Multiple Sclerosis: A guest article by John Dowling, the Senior editor of Social Security Disability Help. 


Who Are the People With Multiple Sclerosis?Guest Article: Stem Cells Showing Great Promise in Remyelinization: A guest article by Daryl Clayton Kennedy. 


 

A Measure of Time - My Life With MSA Measure of Time - My Life With MS: This book by Lauren Singer is available directly from the author. This page on my site provides a tiny amount of publicity for this book. By the way, her dog is named Fred Huggins.    

As for Tomorrow I Cannot Say: 33 Years with Multiple SclerosisAs for Tomorrow I Cannot Say: 33 Years with Multiple Sclerosis: I review this book by Diana Neutze.    

Life on Cripple Creek - Essays on Living with Multiple SclerosisLife on Cripple Creek - essays on Living with Multiple Sclerosis: I review this book by Dean Kramer.    

My Story: A Photographic Essay on Life with Multiple SclerosisMy Story: A Photographic essay on Life with Multiple Sclerosis: I review this book by Amelia Davis.    

When the Road Turns - Inspirational Stories About People with MSWhen the Road Turns - Inspirational Stories About People with MS: I review this book by Margot Russell.    


A Special Note If You Jumped Into My Site
Directly to This Page

This topic is just a part of my overall website. After you check out this topic, you might like to explore the rest of my site and get to know me better.  I recommend that you start with my "Home" Page, then go to the "Front Door", then to "Stuff About Me" and finally, just explore the site. The buttons on the left will take you there.


If You Would Like to Link to My Multiple Sclerosis Pages

Many webmasters only want people to link to the "primary" page of a website. I have a different view.

Because of the importance of Multiple Sclerosis to me I actually encourage other Multiple Sclerosis sites to link directly to my Multiple Sclerosis pages. Click here to find out my special requests for linking to my Multiple Sclerosis pages.


Awards

The following awards were awarded specifically for the
James S. Huggins' Refrigerator Door: Multiple Sclerosis Pages.

Outstanding Website Award
  1999 

sponsored by
Disability Network

Outstanding Website Award 1999
awarded 25.Oct.1999
by the Disability Network
  Winners List with my award listed and a link back to my site.

Editor's Choice Award from HealingWell.com

editor's Choice Award
awarded 26.Oct.1999
by HealingWell.com

Facing Challenge Award

Facing Challenge Award
awarded 30.Oct.1999
by Facing Challenge Award
  Winners List with my award listed and a link back to my site.

Helping Hands Award from Living With Multiple Sclerosis

Helping Hands Award
awarded 15.Nov.1999
by Living With Multiple Sclerosis
  Winners List with my award listed and a link back to my site.


Directory Links

This section of my site (James S. Huggins' Refrigerator Door: Multiple Sclerosis Pages), is listed in the following directories.

Good Health Directory

Good Health Directory
linked 20.Mar.2000

HealingWell.com

HealingWell.com
linked 26.Oct.1999
(see also editor's Choice Award above)

Member of Internet Health Library

Health-Library
linked 21.Aug.2000

A HealthLinks Select Site

HealthLinks
linked 02.Feb.2001

A MedExplorer Selected SIte

Medexplorer
linked 02.Feb.2001

 

This website is accredited by Health On the Net Foundation. Click to verify.

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

Certified Medinex Health Site

This site was a Medinex Certified Health Site and subscribed to the Medinex Code of ethics.

[NB: The above links point to an archive previous page. hosted by the
Internet Archive Wayback Machine. The assets of Medinex were sold in a Chapter 11 bankruptcy sale in March 2003. The site is no longer functional.]

Disclaimer:  I am not a licensed or trained health care provider. I'm just a guy who cares (bunches) about Multiple Sclerosis and who spends (too much) time on the net. I provide the medical information on this website for educational and informational purposes only. It is not a substitute for a health care provider's care and consultation. Please consult your health care provider about any opinions or recommendations with respect to your own symptoms and conditions. Any treatment or nutritional product mentioned on this site is not intended or claimed to diagnose, treat, cure or prevent any disease. Please advise me of any errors or omissions you detect. I receive no funds from any medical products companies. And, I fully disclose all other product affiliations on the Disclaimers, Copyrights and Other Legal Stuff page on this site.

The extra text menu links (previously here) are being removed in the site redesign.
Browser and search engine improvements have eliminated the motivation/necessity for them.

This page created:
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Fri, 18.Aug.2000

Last updated:
16:17, Sat, 10.May.2014

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national multiple sclerosis society, multiple sclerosis association of america, multiple sclerosis foundation, charity standards, better business bureau, american institute of philanthropy, national charities information bureau, qwerty . . . national multiple sclerosis society, multiple sclerosis association of america, multiple sclerosis foundation, charity standards, better business bureau, american institute of philanthropy, national charities information bureau, qwerty