Mkay...about a week or so ago (which "could" be a few months in BrainCheese years) I received some Google Alert or an email of some sort (probably from the National MS Society...NMSS for short) requesting my assistance in support of a national registry for Multiple Sclerosis. I was relieved it was NOT issued from the Center For Disease Control (CDC), as this might mean I was heading down a dark path of "govmet" involvement in my Multiple Sclerosis! I mean, it's bad enough I can barely board a plane or cross the Canadian border (actually, I can GO to Canada, but the USA requires a blood sample and ankle monitor for me to RETURN...or at least that's my interpretation of Homeland Security!)...so the thought of registering myself with some legislated national data base was a bit unnerving. But then I remember I am one of the fortunate INSURED in the United States and I WORK for a government agency, so I assume "they" already have flashed the photos of my latest colonoscopy on their big, high tech computer screens for a *looksee*...unbeknownst to ME, of course. LOL
So, after pondering the notion of a national data base to track each and every one of us MSer's out there, I began to do some research on the subject...and I have to say, I STILL have some mixed feelings about the matter...but that's not the content of this blog post.
In the course of my *research*, I came across some disturbing information...most of it from the NMSS itself...so I focused my *research* specifically on this organization. After all, shouldn't the NMSS ALREADY have a fairly accurate guesstimate of the true number of Americans affected by MS? If you sign up for ANYTHING on their websites or offices (donations or not), "they" always ask what your relationship is to MS...surely "they" had some accurate numbers at their disposal???
Well...not so fast. The disturbing part of what I uncovered made me question even more where and WHY the magical number of "approximately 400,000 Americans are living with/diagnosed with MS". I mean, we ALL know this magical number hasn't changed in over 15 years, in spite of new and improved therapies hitting the market prolonging our life spans and a population in the States that is ever increasing.
The first article I came across regarding the MS population in the USA was this one, in which the NMSS admits they are using figures from a study as old as 1992 to derive their *estimates*. I'm still not certain where the NMSS gets their "every 20 minutes, someone is diagnosed with MS in the United States each year" (you've read THAT one, too...right?) And YES, I AM cutting and pasting the article here...sue me:
Jan 30, 2007
National MS Society Raises Concerns that Recent NIH Study Underestimates Number of People with MS in the U.S.
An article released in the January 30, 2007 issue of the journal Neurology reviews published estimates of the numbers of people affected by various neurological disorders including multiple sclerosis. The authors estimate that the annual incidence of MS in the United States (new cases diagnosed during a 12-month period) was approximately 4.2 new cases per 100,000 population, that the total number of people with MS (prevalence) in the U.S. was approximately 266,000, and that the prevalence rate of nearly 100 per 100,000 was 50% higher than an estimate published 25 years ago.
Lead author Deborah Hirtz, MD, and coauthors, from the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention, derived their figures by looking at those studies published since 1990 that used the best methods. However, data from the U.S. alone was scant, and estimates are complicated by the fact that the disease occurs at higher rates in the northern states and at lower rates in the southern states.
Studies from different geographic areas yield a wide range of estimates for MS prevalence, so there is considerable uncertainty about the exact number of people in the US who have MS. Combining all studies, the range of estimates for the 25th to 75th percentiles (the middle 50% of estimates) was 180,000 to 471,000 persons with MS.
The National MS Society applauds the efforts of the NIH to document the importance of neurological disorders, however, we believe the article may leave the impression that there are fewer people with MS than suggested by previous studies. The Society alone currently has over 300,000 people in its database who have identified themselves as having MS, and based on previous research, the Society estimates the prevalence of MS to be about 135 per 100,000 population in the U.S., for a total MS population of approximately 400,000. Although this figure is higher than the 266,000 reported in the Neurology article, it is within the 25th to 75th percentile of estimates reported in the article.
The Society’s estimate was based on an article published by NIH researchers in 1992 (
Annals of Neurology 1992 Mar;31(3):333-6) that used different study methods. At that time, the authors had concluded that the total number of people with MS in the U.S. was approximately 250,000 to 350,000. The Society arrived at its current figure of 400,000 by using the same age-specific prevalence rates used in the 1992 article, adjusting for population growth and population shifts in the U.S.
Comparisons between the 1992 study and the study published this week are complicated by the fact that the 1992 study included definite, probable and possible cases of MS whereas the study published this week only included definite and probable cases. Eliminating cases of “possible MS” would have led to a somewhat lower figure in the newer study. Viewed in this way, the new figures might be regarded as consistent with the 1992 figures. Both studies concluded that the MS numbers are much higher than those estimated in the 1980’s.
Without a nationwide system of tracking this disease, there will continue to be little hard evidence upon which to base incidence and prevalence figures. The National MS Society supports such a tracking system and is now collaborating with the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry to conduct pilot studies aimed at determining the feasibility of tracking MS (and ALS) to achieve better estimates of the numbers of people who have these diseases in the U.S.
Further studies using the best possible methodology over a wide geographic range in the U.S. would provide more reliable numbers and over time, answer more accurately whether the prevalence of MS is increasing. We agree with the authors that “we need better studies of incidence and prevalence to improve the accuracy of estimates, to enable more confident generalizations to broader populations, and to assess trends.”
Based on this article, I set out on a quest...I called the NMSS and spoke to a nice representative there who, for a lack of a better statement, had NO CLUE HOW TO ANSWER MY QUESTIONS. I wanted a head count...I wanted to KNOW the numbers of MSer's in the United States the NMSS boasts they are assisting?...I wanted to know what the number of MSer's registered with them in 2009 totaled, since 2007 had 300,000 (hit or miss several thousand)? How DO they count us?!?
Well, it's interesting. I spent the good part of several hours (which could be 5 minutes in BrainCheese years) researching the NMSS website for EACH INDIVIDUAL OFFICE AND STATE and compiled a number. I also compiled a complete list of ALL the state offices in the USA (now aren't you impressed?!?), went to each website and, where I could locate numbers, added these numbers up.
If you've ever gone to a particular state MS Chapter website, most of them will list how many MSers they currently serve, how many people "affected" by MS they currently serve, or how many people they "estimate" their chapter serves (which makes it unknown if the latter number reflects MSer's alone or family/friends/professionals...these numbers are broad and VERY misleading at times). Some Chapter websites give NO indication of their particular numbers, so I either called them or emailed them...most responded within a few days, and some not at all (so YOU, dear Chapters, are BLACK LISTED in my list...naughty, naughty!).
Much for my own amusement as to be *helpful* to all of you, I will publish this completed list here. Please also note that many states "share" a particular Chapter (like the All American Chapter, which serves nearly 10 different states)...when this occurs in the list below, I did not add the repeating Chapter's number/head count of service...this would be duplication and done in poor taste. Instead, I simply listed the state where the number/head count originally appears in the list (such as "SEE ALASKA" for the All American Chapter or AAC). To date, this is the ONLY published and complete list of all of the NMSS state chapters I have found...please feel free to plagiarize at your whim and will! Or, you can go to http://www.nmss.org/ and click on each state to make your own (which is far too time consuming...trust me). LOL I'm sure the NMSS will either thank me or sue me for the compilation:
Alabama-
Alabama Chapter (
7,500)
3840 Ridgeway DriveBirmingham, AL 35209Phone: 205-879-8881Fax: 205-879-8869Email:
ALC@NMSS.ORGWebsite:
Alabama Chapter websiteAlaska-
Alaska Office-AAC
All America Chapter (
27,000)
California –
Great Basin Sierra Office-AAC
All America Chapter (SEE ALASKA)
Northern California Chapter (
20,000)
1700 Owens Street, Suite 190San Francisco, CA 95834Phone: 1-800-344-4867Email:
info@msconnection.orgWebsite:
Northern California Chapter websiteSacramento Office
Sacramento, CA 95823Phone: 916-927-8000
Silicon Valley Office
Santa Clara, CA 95050Phone: 408-988-7557
Colorado –
Colorado Chapter (72,000)
900 South Broadway, 2nd Floor Denver, CO 80209Phone: 303-698-7400Fax: 303-698-7421Email: COCRECEPTIONIST@NMSS.ORGWebsite: Colorado Chapter website
Connecticut –
Delaware –
Delaware Chapter (1,500)
Two Mill Road, Suite 106Wilmington, DE 19806Phone: 302-655-5610Fax: 302-655-0993Email: KATE.COWPERTHWAIT@DED.NMSS.ORGWebsite: Delaware Chapter website
Florida -
Georgia –
Georgia Chapter (8,500)
The MS Life Center1117 Perimeter Center West, Suite E101Atlanta, GA 30338Phone: 678-672-1000Fax: 678-672-1015Email: mailbox@nmssga.orgWebsite: Georgia Chapter website
Hawaii –
Hawaii Office-AAC
All America Chapter (SEE ALASKA)
Idaho –
Idaho Office-AAC
All America Chapter (SEE ALASKA)
Illinois –
Gateway Area Chapter (6,000)
1867 Lackland Hill ParkwaySt. Louis, MO 63146Phone: 314-781-9020Fax: 314-781-1440Email: INFO@GATEWAYMSSOCIETY.ORGWebsite: Gateway Area Chapter website
Indiana –
Indiana State Chapter (7,500)
7301 Georgetown Road, Suite 112Indianapolis, IN 46268Phone: 317-870-2500Fax: 317-870-2520Email: Indiana@nmss.orgWebsite: Indiana State Chapter website
Iowa –
Kansas –
Mid America Chapter (30,000)
7611 State Line, Suite 100Kansas City, MO 64114Phone: 913-432-3926Fax: 913-432-6912Email: mailto:INFO@NMSSKC.ORG%20Website: Mid America Chapter website
Local Offices
Eastern Kansas Branch
Topeka, KS 66604Phone: 785-272-5292
Ozark Branch
Springfield, MO 65804Phone: 417-882-8128
St. Joseph Branch
St. Joseph, MO 64506Phone: 816-233-1129
So. Central & W. Kansas Office-AAC (1,700)
All America Chapter
Kentucky –
Indiana State Chapter (SEE INDIANA)
7301 Georgetown Road, Suite 112Indianapolis, IN 46268Phone: 317-870-2500Fax: 317-870-2520Email: Indiana@nmss.orgWebsite: Indiana State Chapter website
Louisiana –
Maine –
Maine Chapter (3,187)
(Maine Chapter website boasts 1:400 population having MS – 2000 census listed 1,274,923…had to manually calculate THIS chapter’s estimate!)
170 US Rt One #200Falmouth, ME 04105Phone: 800-FIGHTMSFax: 207-781-7961Email: INFO@MSMAINE.ORGWebsite: Maine Chapter website
Maryland –
Massachusetts –
Central New England Chapter (14,000)
101A First Ave, Suite 6Waltham, MA 02451Phone: 781-890-4990Fax: 781-890-2089Email: COMMUNICATIONS@MAM.NMSS.ORGWebsite: Central New England Chapter website
Michigan –
Minnesota –
Mississippi –
Mid South Chapter (SEE TENNESSEE)
4219 Hillsboro Rd, Suite 306Nashville, TN 37215Phone: 615-269-9055Fax: 615-269-9470Email: TNS@NMSS.ORGWebsite: Mid South Chapter website
Local Offices
Memphis Regional Office
Memphis, TN 38119Phone: 901-755-4900
Missouri –
Gateway Area Chapter (SEE ILLINOIS)
1867 Lackland Hill ParkwaySt. Louis, MO 63146Phone: 314-781-9020Fax: 314-781-1440Email: INFO@GATEWAYMSSOCIETY.ORGWebsite: Gateway Area Chapter website
Montana –
Montana Office-AAC (SEE ALASKA)
All America Chapter
Nebraska –
Nebraska Chapter (27,000)
328 South 72nd StreetOmaha, NE 68114Phone: 402-505-4000Fax: 402-505-6277Email: NEN@NMSS.ORGWebsite: Nebraska Chapter website
Nevada –
Arizona Chapter (SEE ARIZONA)
5025 E. Washington Street, Suite 102Phoenix, AZ 85034-2005Phone: 480-968-2488Fax: 480-966-4049Email:
mailto:INFO@AZA.NMSS.ORG%20Website:
Arizona Chapter websiteLocal Offices
Phoenix Branch
Tempe, AZ 85281Phone: 480-968-2488
Tucson Branch
Tucson, AZ 85711Phone: 520-747-7472
Nevada Office-AAC (SEE ALASKA)
All America Chapter6000 S. Eastern Avenue, Suite 5CLas Vegas, NV 89119Phone: 702-736-1478Fax: 702-736-2487Email:
NVL@NMSS.ORGWebsite:
Nevada Office-AAC website
New Hampshire –
Central New England Chapter (SEE MASSACHUSETTS)
101A First Ave, Suite 6Waltham, MA 02451Phone: 781-890-4990Fax: 781-890-2089Email: COMMUNICATIONS@MAM.NMSS.ORGWebsite: Central New England Chapter website
New Jersey –
Greater Delaware Valley Chapter (
11,000)
1 Reed Street, Ste. 200Philadelphia, PA 19147Phone: 215-271-1500Fax: 215-271-6122Email:
PAE@NMSS.ORGWebsite:
Greater Delaware Valley Chapter websiteLocal Offices
Lehigh Valley Branch
Allentown, PA 18103Phone: 610-782-9450
New Mexico –
Panhandle Office-AAC (SEE ALASKA)
All America Chapter6222 Canyon DriveAmarillo, TX 79109Phone: 806-468-8005Fax: 806-468-8022Email: TXP@NMSS.ORGWebsite: Panhandle Office-AAC website
Rio Grande Office-AAC
All America Chapter (SEE ALASKA)
New York –
Long Island Chapter (42,000)
40 Marcus Dr., Suite 100Melville, NY 11747Phone: 631-864-8337Fax: 631-864-8342Email: PMASTROTA@NMSSLI.ORGWebsite: Long Island Chapter website
North Carolina –
North Dakota –
North Central States Chapter (SEE IOWA)
2508 S. Carolyn AvenueSioux Falls, SD 57106Phone: 605-336-7017Fax: 605-336-8088Email: NTH@NMSS.ORGWebsite: North Central States Chapter website
Ohio –
Ohio Buckeye Chapter (
10,000)
6155 Rockside Road, Suite 202 Independence, OH 44131Phone: 800-667-7131Fax: 216-696-2817Email:
WEBMASTER@NMSSOHA.ORGWebsite:
Ohio Buckeye Chapter websiteLocal Offices
Central and Southeastern Ohio Office
Worthington, OH 43085Phone: 614-880-2290
Northeast Ohio Office
Independence, OH 44131Phone: 216-696-8220
West Virginia Office-AAC (SEE ALASKA)
All America Chapter
Oklahoma –
Panhandle Office-AAC (SEE ALASKA)
All America Chapter
Oregon –
Oregon Chapter (7,000)
104 SW Clay St.Portland, OR 97201Phone: 503-223-9511Fax: 503-223-2912Email: mailto:INFO@DEFEATMS.COM%20Website: Oregon Chapter website
Pennsylvania –
Allegheny District Chapter (6,700)
1501 Reedsdale Street, Suite 105Pittsburgh, PA 15233Phone: 412-261-6347Fax: 412-232-1461Email: PAX@NMSS.ORGWebsite: Allegheny District Chapter website
Local Offices
Keystone Branch
Duncansville, PA 16635Phone: 814-696-1017
Central Pennsylvania Chapter (
5,700)
2040 Linglestown Rd., Ste. 104Harrisburg, PA 17110Phone: 717-652-2108Fax: 717-652-2590Email:
PAC@NMSS.ORGWebsite:
Central Pennsylvania Chapter websiteLocal Offices
North Central Regional Office
Williamsport, PA 17701Phone: 570-326-3751
Eastern Regional Office
Lancaster, PA 17601Phone: 717-509-6301
South Florida Chapter (SEE FLORIDA)
3201 West Commercial Blvd., #127Fort Lauderdale, FL 33309Phone: 954-731-4224Fax: 954-739-1398Email: FLS@NMSS.ORGWebsite: South Florida Chapter website
Rhode Island –
Rhode Island Chapter (2,000)
205 Hallene Road, #209Warwick, RI 02886Phone: 401-738-8383Fax: 401-738-8469Email: CATIE.DUSSAULT@RIR.NMSS.ORGWebsite: Rhode Island Chapter website
South Carolina –
Mid Atlantic Chapter (SEE NORTH CAROLINA)
9801-I Southern Pine Blvd.Charlotte, NC 28273Phone: 704-525-2955Fax: 704-527-0406Email: NCP@NMSS.ORGWebsite: Mid Atlantic Chapter website
South Dakota –
North Central States Chapter (SEE IOWA)
2508 S. Carolyn AvenueSioux Falls, SD 57106Phone: 605-336-7017Fax: 605-336-8088Email: NTH@NMSS.ORGWebsite: North Central States Chapter website
Tennessee –
Texas –
Lone Star Chapter (20,000)
8111 N. Stadium Drive, Suite 100Houston, TX 77054Phone: 713-526-8967Fax: 713-394-7422Email: TXH@NMSS.ORGWebsite: Lone Star Chapter website
Utah -
Vermont –
Virginia –
Blue Ridge Chapter (3,000)
One Morton Drive, Suite 106Charlottesville, VA 22903Phone: 434-971-8010Fax: 434-979-4475Email: VAB@NMSS.ORGWebsite: Blue Ridge Chapter website
WASHINGTON –
Greater Washington Chapter (9,000)
192 Nickerson Street, Suite 100Seattle, WA 98109Phone: 206-284-4236Fax: 206-284-4972Email: GREATERWAINFO@NMSSWAS.ORGWebsite: Greater Washington Chapter website
Washington D.C. –
National Capital Chapter (SEE MARYLAND)
1800 M Street, NW, Suite 750 SouthWashington, DC 20036Phone: 202-296-5363Fax: 202-296-3425Email: INFORMATION@MSandYOU.ORGWebsite: National Capital Chapter website
West Virginia –
West Virginia Office-AAC (SEE ALASKA)
All America Chapter2 Players Club Drive, Suite 104Charleston, WV 25311Phone: 304-343-5153Fax: 304-343-5154Email: KAMI.BAKER@NMSS.ORGWebsite: West Virginia Office-AAC website
Wisconsin –
Minnesota Chapter (SEE MINNESOTA)
200 12th Avenue SouthMinneapolis, MN 55415Phone: 612-335-7900Fax: 612-335-7997Email: mailto:INFO@MSSOCIETY.ORG%20Website: Minnesota Chapter website
Wisconsin Chapter (10,000)
1120 James Drive, Ste. AHartland, WI 53029Phone: 262-369-4400Fax: 262-369-4410
Wyoming –
Wyoming Office-AAC (SEE ALASKA)
All America Chapter
And now, for that head count (taking INTO account some Chapters FAILED TO RESPOND TO ME or do not list their service numbers anywhere on their Chapter website)...if you add all of the numbers bolded for each state Chapter of the NMSS, the grand total comes to:
661,010
Well OVER that magical 400,000 guesstimate...but remember...each Chapter website has their OWN mystical way of formulating the numbers of people they serve...sometimes combining your garbage man in their counts (because he knows you and YOU have MS!) and sometimes bothering to list the ACTUAL or ESTIMATED number of people DIAGNOSED WITH MS that the particular chapter serves. I don't know about you, but I'm kind of selfish here...I don't especially want to know how many people "might" be affected because I have MS...I just want to know how many people WITH MS are out there! Is that too much to ask?!?!
Apparently, it IS too much to ask. So...bring on that national registry and sign me up. Either that or, the NMSS needs to get a bigger abacus and somebody who can count past 400,000...'cause I think it's time we all jump ahead 15 years and start adding and subtracting with a little more accuracy...