Updated February 2, 2010
What is a Support Group?
The very best part of this foundation is our members and the support we share. We gather for the Educational Forum, but that is only once a year. Local support groups provide a more frequent opportunity for members to meet, share information, compare experience, and provide mutual encouragement.
IWMF support group practices vary from location to location and are decided upon by the needs of the members themselves. Some groups meet in members' homes, others meet in community meeting spaces or in hospital conference rooms. Some groups meet only twice a year, while others meet every month or two. Some meetings are held in the evening, some in the afternoon. In every case, these periodic meetings provide updates on new treatments as well as news of IWMF activities. But most importantly, local group meetings provide an avenue for sharing personal experiences - something that is hard to find in other venues. This is the most important function of IWMF support groups.
What Happens at Support Group Meetings?
A common activity in all groups is sharing personal history and medical experience. Every member has a chance to describe his or her WM journey and to ask questions about his or her particular situation. For most members, this period of sharing is the heart and soul of a support group experience.
Support group meetings may also consist of invited presentations by:
- medical specialists knowledgeable about WM
- general practitioners with information on how to relieve symptoms or combat treatment side effects
- nurses or other medical professionals who can explain blood tests and lab reports
- nutritionists and complementary health practitioners
A meeting may also include a report about IWMF activities or about local fund raising efforts. Many groups include snacks and drinks at meetings; some groups go out for dinner together at a restaurant after the meeting; some groups hold potluck luncheons or dinners. All groups provide an opportunity to get to know other Waldenstrom's patients and IWMF members.
All groups have a video copy of the medical presentations at the most recent educational forum.
Forming a new Support Group:
The IWMF encourages new support groups, and we wish to provide assistance in any way we can. We will supply a list of WM patients in your area (the use of this list is strictly limited to mailing information about support group meetings). We will also supply packets of information about WM for attendees, ideas on how to launch and promote a group, and help with programs and procedures. All it takes to start a group is a volunteer willing to take the time and spend the energy to organize the first few meetings.
Support group leaders are encouraged to have a contact on the IWMF Board of Trustees as a liaison for obtaining information to share at meetings, and providing feedback to the Board for further development of support group programs and services.
The IWMF Support Group Coordinator, and a member of the Board of Trustees, is Cindy Furst, (970) 667-5343, Cell: (970) 227-4686 cindyfurst@gmail.com.
ALABAMA
Mal Roseman
770-392-1255
malroseman@comcast.net
ARIZONA
Phoenix
Ed Nadel
480-502-5045
enadeL63@aol.com
ARKANSAS
Eastern
Bill Paul
901-767-6630
Billpaul1@juno.com
CALIFORNIA
Los Angeles
Kathie Coen
310-454-7127
kdcoen@roadrunner.com
Orange County
Emil Parente
949-388-9666
pnepar@cox.net
Marty Glassman
949-458-7147
mglassman@cox.net
Sacramento
Cynthia Nicholson
916-851-9003
cyn.nicholson@att.net
San Francisco
Alyce & Terry Rossow
925-447-8881
rossow@ieee.org
COLORADO
Bill Bass
303-753-0070
303-808-5734 cell
basswilliam9@gmail.com
Cindy Furst
970-667-5343
970-227-4686 cell
cindyfurst@gmail.com
Roy Parker
303-470-6699
roypar@gmail.com.
CONNECTICUT
Francoise Lampe
203-431-1455
wmfgL@sbcglobal.net
Bob Hammond
203-426-2772
Rhamm17@aol.com
Linda Mc Intosh
860-460-6445
lynmac47@aol.com
DELAWARE
Karen Pindzola
717-845-5937
karenpindzola@yahoo.com
FLORIDA
Ft. Lauderdale Area
Charlie Koch
954-476-8726
bonnie143@bellsouth.net
Theo Vagionis
954-564-9262
wesport2@msn.com
Tallahassee
James o’Neill
850-656-5586
jamesoneill@embarqmail.com
West Coast
Herb Kallman
239-466-6911
margerina@aol.com
Tampa
Linda Rothenberg
352-688-0316
A1pets@tampabay.rr.com
GEORGIA
Atlanta
Mal & Judy Roseman
770-392-1255
malroseman@comcast.net
HAWAII
(Nov – Apr)
Sandy Skillicorn
808-891-2882
jLsLs@aol.com
IDAHO
Eastern
Barbara Britschgi
208-522-2130
cbrits@cableone.net
Western
Judy Clark
208-888-0346
jzclark@cableone.net
ILLINOIS
Chicago
Don Brown
630-323-5894
Ldonbrown@msn.com
EASTERN INDIANA
Marion Petry
mLpetry123@earthlink.net
937-438-8850
KENTUCKY
Marion Petry
mLpetry123@earthlink.net
937-438-8850
MARYLAND
Catherine Naylor
301-229-0319
catherinenaylor@verizon.net
MASSACHUSETTS
Boston
Lynne & Joe Mara
781-749-0204
jmara@nordicgroupusa.com
Judy Christensen
781-335-5698
MICHIGAN
Peter & Barbra Boyse
989-415-9936
peterdboyse45@charter.net
MINNESOTA
Minneapolis/St. Paul
Michelle Blazek
651-730-0061
mandsblazek@aol.com
MISSISSIPPI
Bill Paul
901-767-6630
Billpaul1@juno.com
MISSOURI
Nancy Gerhardy
417-889-2461
gerhardy2000@yahoo.com
MONTANA
Barbara Britschgi
208-522-2130
cbrits@cableone.net
Regional Contact:
Cindy Furst
970-667-5343
970-227-4686 cell
cindyfurst@gmail.com
NEVADA
Eastern
Gerri McDonald
801-484-0360
gerri-sLc@comcast.net
Las Vegas
Robin Grenz
702-657-3860
Rgrenz1@cox.net
NEW ENGLAND
Boston
Lynne & Joe Mara
781-749-0204
jmara@nordicgroupusa.com
Judy Christensen
781-335-5698
Western MA, VT & CT
Mel Horowitz
518-449-8817
wmcure@yahoo.com
NEW MEXICO
Regional Contact:
Bill Bilbro
575-642-4987
wbilbro@gmail.com
NEW YORK
Albany
Mel Horowitz
518-449-8817
wmcure@yahoo.com
New York City
Neil Massoth
201-444-6253
nmassoth@aol.com
Rochester
Stephen E. French, Sr.
585-621-3317
sfrench@rochester.rr.com
NORTH CAROLINA
Bob Zehner
804-796-3571
bobnbetsz@comcast.net
Don Nolan
828-692-1114
nondolan@aol.com
NORTH DAKOTA
Regional Contact:
Cindy Furst
970-667-5343
970-227-4686 cell
cindyfurst@gmail.com
EASTERN OHIO
Shariann Hall
330-533-4921
shari19@juno.com
Marcia Klepac
412-421-2437
marciaklep@hotmail.com
WESTERN OHIO
Marion Petry
mLpetry123@earthlink.net
937-438-8850
OKLAHOMA
Western
Regional Contact:
Bill Bilbro
575-642-4987
wbilbro@gmail.com
OREGON
Joan Berglund
503-668-5037
rjbergie@verizon.net
PENNSYLVANIA
Philadelphia
Karen Pindzola
717-845-5937
karenpindzola@yahoo.com
Harrisburg
Terrie Eshleman
717-665-7393
tmesh74@ptd.net
W. PENN, E. OH, WV
Shariann Hall
330-533-4921
shari19@juno.com
Marcia Klepac
412-421-2437
marciaklep@hotmail.com
RHODE ISLAND
Linda Mc Intosh
860-460-6445
lynmac47@aol.com
SOUTH CAROLINA
John & Paula Austin
803-644-6002
jhaustin@bellsouth.net
SOUTH DAKOTA
Regional Contact
Cindy Furst
970-667-5343
970-227-4686 cell
cindyfurst@gmail.com
TENNESSEE
Central & Western
Bill Paul
901-767-6630
Billpaul1@juno.com
Eastern
Regional Contact:
Myrna Daniel
706-539-2866
mdmermer@yahoo.com
TEXAS
Dallas
John Knutson
972-726-7790
johnknutson@tx.rr.com
Steve Pine
214-244-5515
iwmf4steve@verizon.net
Houston
Barbara & John Manousso
713-840-0828
wm@manousso.us
Western
Regional Contact:
Bill Bilbro
575-642-4987
wbilbro@gmail.com
UTAH
Gerri McDonald
801-484-0360
or 801-232-5811
gerri-sLc@comcast.net
VIRGINIA
Bob Zehner
804-796-3571
bobnbetsz@comcast.net
WASHINGTON
Malcolm Brewer
206-772-7430
clanbrewer@gmail.com
Kristen Jenson
425-483-6605
Kristen@jensonfamily.org
WASHINGTON D.C., NORTHERN VA
Catherine Naylor
301-229-0319
catherinenaylor@verizon.net
WISCONSIN
Northwest WI
Michelle Blazek
651-730-0061
mandsblazek@aol.com
Southeast WI
Don Brown
630-323-5894
ldonbrown@msn.com
WYOMING
Bill Bass
303-753-0070
303-808-5734 cell
basswilliam9@gmail.com
Regional Contact:
Cindy Furst
970-667-5343
970-227-4686 cell
cindyfurst@gmail.com
INTERNATIONAL SUPPORT GROUPS AND CONTACTS
AUSTRALIA
Gareth Evans
WMozzies-owner@yahoogroups.com
BELGIUM
Joanna Van Reyn
+32 9 335 46 60
joanna.vanreyn@cmp-vlaanderen.be
CANADA
Alberta
Cam Fraser
403-281-8278
cmfraser@shaw.ca
Alberta
Stu Boland
403-281-0271
stu_boland@hotmail.com
Montreal
Regional Contact:
Sandra Proctor
450-672-4336
sandra.proctor@sympatico.ca
Nova Scotia
Susan Gagnon
902-446-9533
Suemar3@hotmail.com
Ottawa
Jan Jones
613-722-2385
janellejones@rogers.com
Janet Cherry
613-596-1413
janet.parcher.cherry@sympatico.ca
Toronto
Arlene Hinchcliffe
905-337-2450
wmfc@noco.ca
Vancouver
Charlene Kornaga
250-474-7011
dennischarlene.kornaga@
shaw.ca
DENMARK
Steffen Stello
+45 3582 7707
Mobile: +45 2123 7707
snejka@mail.dk
FINLAND
Veikko Hoikkala
+35 8500 48 4864
veikko.hoikkala@finnforest.com
FRANCE
Nicole Bastin
+02.54.37.89.52
nicbastin@aol.com
GERMANY
Regional Contact:
Dr. Rolf Pelzing
rolf.pelzing@t-online.de
GREECE
Alexia Kapralou
+30 210 6858574 kapralou_alexia@hotmail.com
INDIA
Regional Contact:
Anil and Vasundhara Somani
+91 98300 49300
asomani@vsnl.com
Mumbai & Western India
Sanjeev Kharwadkar
91-98210-69769
92-22-6691-9957
swkharwadkar@yahoo.co.in
IRELAND
Anne Staples
annehstaples@yahoo.ie
+35 353 9158825
ISRAEL
Moshe Kwart
+97 254 2270527
m.kwart@tehilot.com
JAPAN
Regional Contact:
Sanjeev Kharwadkar
+81 03-6712-1887
+81 090-9971-4541 mobile
swkharwadkar@yahoo.co.in
THE NETHERLANDS
Regional Contact:
Marlies Oom
+31 (0) 73.52.17.643
moom@planet.nl
UNITED KINGDOM
Nigel Pardoe & Cheryl Luckie
+44 020 8579 8120
info@septemberservices.com
cheryl.luckie@septemberservices.com
Sussex
Mike Dewhirst
+44 1323 841735
mkdewhirst@yahoo.co.uk
Birmingham & West Midlands
Geoffrey Willsher
+44 0121429 1038
willsher.s@btinternet.com
