Tuesday, April 21, 2009

How DO They Count Us?!?...

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 website

Alaska-

Alaska Office-AAC
All America Chapter (27,000)

511 West 41st Avenue, Suite 101Anchorage, AK 99503Phone: 907-562-7347Fax: 907-562-6673Email: AKA@NMSS.ORGWebsite: Alaska Office-AAC website

Arizona-

Arizona Chapter (8,000)
5025 E. Washington Street, Suite 102Phoenix, AZ 85034-2005Phone: 480-968-2488Fax: 480-966-4049Email: mailto:INFO@AZA.NMSS.ORG%20Website: Arizona Chapter website

Arkansas –

Arkansas Office-AAC
All America Chapter (SEE ALASKA)
1100 N. University, Suite 255Little Rock, AR 72207Phone: 501-663-8104Fax: 501-666-4355Email: ARR@NMSS.ORGWebsite: Arkansas Office-AAC website


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


California –


Great Basin Sierra Office-AAC
All America Chapter (SEE ALASKA)

4600 Kietzke Ln., Ste. K225Reno, NV 89502Phone: 775-329-7180Fax: 775-827-3167Email: mailto:nvn@nvn.nmss.org%20Website: Great Basin Sierra Office-AAC website


Northern California Chapter (20,000)
1700 Owens Street, Suite 190San Francisco, CA 95834Phone: 1-800-344-4867Email: info@msconnection.orgWebsite: Northern California Chapter website
Sacramento Office
Sacramento, CA 95823Phone: 916-927-8000
Silicon Valley Office
Santa Clara, CA 95050Phone: 408-988-7557


Pacific South Coast Chapter (18,000)
5950 La Place Ct., Ste. 200Carlsbad, CA 92008Phone: 760-448-8400Fax: 760-804-9266Email: msinfo@mspacific.orgWebsite: Pacific South Coast Chapter website


Southern California Chapter (101,500)
2440 South Sepulveda Blvd., Suite 115Los Angeles, CA 90064Phone: 310-479-4456Fax: 310-479-4436Email: MS@CAL.NMSS.ORGWebsite: Southern California Chapter website


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


Connecticut (6,000)
659 Tower Avenue, First FloorHartford, CT 06112Phone: 860/714/2300Fax: 860-714-2301Email: info@ctfightsMS.orgWebsite: Connecticut website


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 -


Mid Florida Chapter (10,000)
2701 Maitland Ctr. Pkwy., Ste. 100Orlando, FL 32751Phone: 407-478-8880Fax: 407-478-8893Email: mailto:INFO@FLC.NMSS.ORG%20Website: Mid Florida Chapter website
Local Offices
Tampa Area Office
Tampa, FL 33634Phone: 813-889-8303


North Florida Chapter (18,000)
4237 Salisbury RoadBldg. #4, Suite 406Jacksonville, FL 32216Phone: 904-332-6810Fax: 904-332-0898Email: MSNORFLA@FLN.NMSS.ORGWebsite: North Florida Chapter website


South Florida Chapter (6,000…found via email!)
3201 West Commercial Blvd., #127Fort Lauderdale, FL 33309Phone: 954-731-4224Fax: 954-739-1398Email: FLS@NMSS.ORGWebsite: South Florida Chapter website


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

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


Hawaii


Hawaii Office-AAC
All America Chapter (SEE ALASKA)

418 Kuwili Street, #105Honolulu, HI 96817Phone: 808-532-0806Fax: 808-532-0814Email: HIH@NMSS.ORGWebsite: Hawaii Office-AAC website


Idaho


Idaho Office-AAC
All America Chapter (SEE ALASKA)
6901 W. Emerald St., Suite 207Boise, ID 83704Phone: 208-388-4253Fax: 208-388-1907Email: IDI@NMSS.ORGWebsite: Idaho Office-AAC website


Inland Northwest Chapter (2,000)
818 East SharpSpokane, WA 99202Phone: 509-482-2022Fax: 509-483-1077Email: WAI@NMSS.ORGWebsite: Inland Northwest Chapter website


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

Greater Illinois Chapter (20,000 living with MS in Illinois per website)
525 West Monroe Street Chicago, IL 60661Phone: 312-421-4500Fax: 312-421-4544Email: mailto:cgic@ild.nmss.org%20Website: Greater Illinois 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

Kentucky-Southeast Indiana Chapter (4,600)
11700 Commonwealth Drive, Suite 500Louisville, KY 40299Phone: 502-451-0014Fax: 502-451-9747Email: KYW@NMSS.ORGWebsite: Kentucky-Southeast Indiana Chapter website


Iowa


North Central States Chapter (8,000)
2508 S. Carolyn AvenueSioux Falls, SD 57106Phone: 605-336-7017Fax: 605-336-8088Email: NTH@NMSS.ORGWebsite: North Central States Chapter website


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

9415 E. Harry St., Suite 706Wichita, KS 67211Phone: 316-264-7043Fax: 316-264-5436Email: KSS@NMSS.ORGWebsite: So. Central & W. Kansas Office-AAC website


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

Kentucky-Southeast Indiana Chapter (SEE INDIANA)
11700 Commonwealth Drive, Suite 500Louisville, KY 40299Phone: 502-451-0014Fax: 502-451-9747Email: KYW@NMSS.ORGWebsite: Kentucky-Southeast Indiana Chapter website


Ohio Valley Chapter (6,000)
4440 Lake Forest Drive, Suite 120Cincinnati, OH 45242Phone: 513-769-4400Fax: 513-769-6019Email: INFO@OHG.NMSS.ORGWebsite: Ohio Valley Chapter website


West Virginia Office-AAC
All America Chapter (SEE ALASKA)2 Players Club Drive, Suite 104Charleston, WV 25311Phone: 304-343-5153Fax: 304-343-5154Email: KAMI.BAKER@NMSS.ORGWebsite: West Virginia Office-AAC website


Louisiana


Louisiana Chapter (4,000)
4613 Fairfield St.Metairie, LA 70006Phone: 504-832-4013Fax: 504-831-7188Email: mailto:LOUISIANACHAPTER@NMSS.ORG%20Website: Louisiana Chapter website


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


Maryland Chapter (6,500)
11403 Cronhill Dr., Ste. EOwings Mills, MD 21117Phone: 443-641-1200Fax: 443-641-1201Email: INFO@NMSS-MD.ORGWebsite: Maryland Chapter website


National Capital Chapter (6,500)
1800 M Street, NW, Suite 750 SouthWashington, DC 20036Phone: 202-296-5363Fax: 202-296-3425Email: INFORMATION@MSandYOU.ORGWebsite: National Capital Chapter website


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


Michigan Chapter (18,000)
21311 Civic Center DriveSouthfield, MI 48076Phone: 248-350-0020Fax: 248-350-0029Email: INFO@MIG.NMSS.ORGWebsite: Michigan Chapter website


Minnesota


Minnesota Chapter (9,000)
200 12th Avenue SouthMinneapolis, MN 55415Phone: 612-335-7900Fax: 612-335-7997Email: mailto:INFO@MSSOCIETY.ORG%20Website: Minnesota Chapter website


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

Mississippi Office-AAC (SEE ALASKA)
All America Chapter145 Executive Drive, Suite 1Madison, MS 39110Phone: 601-856-5831Fax: 601-856-7173Email: MSM@NMSS.ORGWebsite: Mississippi Office-AAC website


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

Mid America Chapter (SEE KANSAS)
7611 State Line, Suite 100Kansas City, MO 64114Phone: 913-432-3926Fax: 913-432-6912Email: mailto:INFO@NMSSKC.ORG%20Website: Mid America Chapter website


Montana


Montana Office-AAC (SEE ALASKA)
All America Chapter
1629 Avenue D, Suite 2-CBillings, MT 59102Phone: 406-252-5927Fax: 406-252-5956Email: MTT@NMSS.ORGWebsite: Montana Office-AAC website


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 website
Local Offices
Phoenix Branch
Tempe, AZ 85281Phone: 480-968-2488
Tucson Branch
Tucson, AZ 85711Phone: 520-747-7472


Great Basin Sierra Office-AAC (SEE ALASKA)
All America Chapter4600 Kietzke Ln., Ste. K225Reno, NV 89502Phone: 775-329-7180Fax: 775-827-3167Email: mailto:nvn@nvn.nmss.org%20Website: Great Basin Sierra Office-AAC website


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 website
Local Offices
Lehigh Valley Branch
Allentown, PA 18103Phone: 610-782-9450


New Jersey Metro Chapter (10,000)
1 Kalisa Way, Suite 205Paramus, NJ 07652Phone: 201-967-5599Fax: 201-967-7085Email: INFO@NJM.NMSS.ORGWebsite: New Jersey Metro Chapter website
246 Monmouth RoadOakhurst, NJ 07755Phone: 732-660-1005Fax: 732-660-1338Email: INFO@NJM.NMSS.ORGWebsite: website


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)

4125 Carlisle Blvd. NE, Ste. AAlbuquerque, NM 87107Phone: 505-243-2792Fax: 505-244-0629 Email: NMX@NMSS.ORGWebsite: Rio Grande Office-AAC website


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

New York City Chapter (5,923)
733 Third Ave., 3rd Flr.New York, NY 10017Phone: 212-463-7787Fax: 212-986-7981Email: INFO@MSNYC.ORGWebsite: New York City Chapter website


Southern New York Chapter (2,800)
2 Gannett Drive, Suite LCWhite Plains, NY 10604Phone: 914-694-1655Fax: 914-694-1656Email: NYV@NMSS.ORGWebsite: Southern New York Chapter website


Upstate New York Chapter (12,000)
1650 South Avenue, Suite 100Rochester, NY 14620Phone: 585-271-0801Fax: 585-442-2817Email: CHAPTER@MSUPSTATENY.ORGWebsite: Upstate New York Chapter website


North Carolina


Central North Carolina Chapter (2,300)
2211 West Meadowview Road, Suite 30Greensboro, NC 27407Phone: 336-299-4136Fax: 336-855-3039Email: NCC@NMSS.ORGWebsite: Central North Carolina Chapter website


Eastern No. Carolina Chapter (4,600)
3101 Industrial Drive, Suite 210Raleigh, NC 27609Phone: 919-834-0678Fax: 919-834-9822Email: NCT@NMSS.ORGWebsite: Eastern No. Carolina Chapter website


Hampton Roads Chapter (2,700)
760 Lynnhaven Pkwy, Suite 201Virginia Beach, VA 23452Phone: 757-490-9627Fax: 757-490-1617Email: info@fightms.comWebsite: Hampton Roads Chapter website


Mid Atlantic Chapter (7,400)
9801-I Southern Pine Blvd.Charlotte, NC 28273Phone: 704-525-2955Fax: 704-527-0406Email: NCP@NMSS.ORGWebsite: Mid Atlantic Chapter website


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


Northwestern Ohio Chapter (1,400)
401 Tomahawk DriveMaumee, OH 43537Phone: 419-897-9533Fax: 419-897-9733Email: NWOHIO@AMPLEX.NETWebsite: Northwestern Ohio Chapter website


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 website
Local Offices
Central and Southeastern Ohio Office
Worthington, OH 43085Phone: 614-880-2290
Northeast Ohio Office
Independence, OH 44131Phone: 216-696-8220


Ohio Valley Chapter (SEE KENTUCKY)
4440 Lake Forest Drive, Suite 120Cincinnati, OH 45242Phone: 513-769-4400Fax: 513-769-6019Email: INFO@OHG.NMSS.ORGWebsite: Ohio Valley Chapter website


West Virginia Office-AAC (SEE ALASKA)
All America Chapter

2 Players Club Drive, Suite 104Charleston, WV 25311Phone: 304-343-5153Fax: 304-343-5154Email: KAMI.BAKER@NMSS.ORGWebsite: West Virginia Office-AAC website


Oklahoma


Oklahoma Chapter (3,000 diagnosed with MS)
4606 East 67th St, Bldg 7, Ste 103Tulsa, OK 74136Phone: 918-488-0882Fax: 918-488-0913Email: LISA.GRAY@OKE.NMSS.ORGWebsite: Oklahoma Chapter website


Panhandle Office-AAC (SEE ALASKA)
All America Chapter

6222 Canyon DriveAmarillo, TX 79109Phone: 806-468-8005Fax: 806-468-8022Email: TXP@NMSS.ORGWebsite: Panhandle Office-AAC website


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 website
Local Offices
North Central Regional Office
Williamsport, PA 17701Phone: 570-326-3751
Eastern Regional Office
Lancaster, PA 17601Phone: 717-509-6301


Greater Delaware Valley Chapter (SEE NEW JERSEY)
1 Reed Street, Ste. 200Philadelphia, PA 19147Phone: 215-271-1500Fax: 215-271-6122Email: PAE@NMSS.ORGWebsite: Greater Delaware Valley Chapter website

Puerto Rico


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


Mid South Chapter (A MYSTERY NUMBER!)
4219 Hillsboro Rd, Suite 306Nashville, TN 37215Phone: 615-269-9055Fax: 615-269-9470Email: TNS@NMSS.ORGWebsite: Mid South Chapter website


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

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 (SEE ALASKA)
All America Chapter4125 Carlisle Blvd. NE, Ste. AAlbuquerque, NM 87107Phone: 505-243-2792Fax: 505-244-0629Email: NMX@NMSS.ORGWebsite: Rio Grande Office-AAC website


West Texas Office-AAC (SEE ALASKA)
All America Chapter1031 Andrews Hwy, Suite 201Midland, TX 79701Phone: 432-522-2143Fax: 432-694-7970Email: TXQ@NMSS.ORGWebsite: West Texas Office-AAC website


Utah -


Utah State Chapter (4,500)
6364 South Highland Drive, Suite 101Salt Lake City, UT 84121Phone: 801-424-0113Fax: 801-424-0122Email: infoutah@nmss.orgWebsite: Utah State Chapter website


Vermont


Vermont Office-AAC (SEE ALASKA)
All America Chapter75 Talcott Road, Suite 40Williston, VT 05495Phone: 802-864-6356Fax: 802-864-6509Email: VTN@NMSS.ORGWebsite: Vermont Office-AAC website


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

Central Virginia Chapter (MYSTERY CHAPTER)
2112 W. Laburnum Avenue, Ste. 204Richmond, VA 23227Phone: 804-353-5008Fax: 804-353-5595Email: mailto:JUDY.GRIFFIN@NMSS.ORGWebsite: Central Virginia Chapter website


Hampton Roads Chapter (SEE NORTH CAROLINA)
760 Lynnhaven Pkwy, Suite 201Virginia Beach, VA 23452Phone: 757-490-9627Fax: 757-490-1617Email: info@fightms.comWebsite: Hampton Roads Chapter website


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


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

Inland Northwest Chapter (SEE IDAHO)
818 East SharpSpokane, WA 99202Phone: 509-482-2022Fax: 509-483-1077Email: WAI@NMSS.ORGWebsite: Inland Northwest 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

525 Randall Ave., Suite 105Cheyenne, WY 82001Phone: 307-433-9590Fax: 307-433-8657Email: WYY@NMSS.ORGWebsite: Wyoming Office-AAC website


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...

9 comments:

LISA EMRICH said...

Linda, read this http://www.healthcentral.com/multiple-sclerosis/c/19065/38433/people

I did the exact same thing, but stopped at about 560,000 in my count...and those darn chapters who don't report their numbers just really mess it all up.

Great minds think alike.

Anne said...

Hi Linda:

I mused over this topic on my blog 3/30/09 Numbers Games and you are right. They don't add up.

It's been so long since a NEW number has been put "out there" that many are operating on OLD information.

Anne

Webster said...

Ladies, In my humble opinion, you have way too much time on your hands. I fall into the "who really gives a damn" category - although if anyone asks me, and in 27 years no one 'official' has - except for the Social Security Administration - I will proudly tell them "Why, yes. Yes indeed I do."

Bubbie said...

Wow, what struck me was the outrageous number of peeps in Colorado. Guessing a rocky mountain high isn't necessarily a good high. I would've thought it would be less than say...New Jersey...

Jen said...

That's one AWFULLY BIG abacus!..LOL..

Cranky said...

I am impressed that you went through the work of compiling this piecemeal count.

A site that Anne has linked from her blog is the MS Observer. Interestingly, that has two stats quoted in two continguous posts that would make one believe there are a LOT more MSers in the US. The poster quotes that there are about 5.6MM individuals in the US with some sort of paralysis, those with MS accounting for 17% of that population. When I do the math, that's about 900,000. The subsequent post about public perceptions of those with MS states 20% of MSers end up in wheelchairs. If "paralysis" affects more than 20% (since you could have some paralysis effects without needing a chair), say 50%, that puts the US MS pop at 1.8MM.

Bottom line - without good stats, how best to prioritize for public health dollars, etc. I'm sure you're far more cognizant of the underrepresentation impacts than I could be.

harkoo said...

Thanks for doing the research and for bringing this to our attention. It would also be nice if they could gather facts of our individual case histories for new data.

Kelley said...

Linda,
As always, I SO appreciate your dedication! I do not have the patience to take on a project like that!

I have always suspected the 400,000 number was inaccurate. Now we have PROOF! ;)

Peace,
Kelley

Walk Stars said...

I tried to find out how many of y'all there were one time and gave up in frustration. I wonder also, how many people are out there with unregistered MS?

In the BC world (the pink one - not the dinosaur one) our magic number is 1 in 8 women. Which isn't really and truly true - but it sounds good in a pamphlet!

I'm also with you on the entire 'people affected' BS. In the BC world they like to refer to the husbands and boyfriends as co-survivors. I blame that particular bit of nonsense on the natural childbirth folks! And don't even get me started on men who proudly announce, "We're Pregnant!"

Our blog has been quiet for so long because I'm halfway through a twelve page post about statistics and I can't seem to keep it short - or keep the sarcasm and flippancy out of it.

Thanks for the concern - and the reminder that we can make our posts as long and sarcastic as we want!