Updated November 12, 2007
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 Karen Pindzola, (717) 845-5937, karenpindzola@yahoo.com.
IWMF SUPPORT GROUP CHAPTER LISTING AS OF 04/01/2008
|
ALABAMA
Mal Roseman
770-392-1255
malroseman@comcast.net
ARIZONA
Phoenix
Ed Nadel
480-502-5045
EnadeL63@aol.com
Tucson
Jackie Smith
Winter-520-299-5470
Summer-605-717-2862
(Nov. 1 – Apr. 1)
jackie@dps1.net
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@cos.net
Sacramento
Cynthia Nicholson
916-852-6012
nicholson26@comcast.net
Santa Barbara
Cici Menchen
805-687-1736
cici@menchen.sbcoxmail.com
San Francisco
Penni Wisner
415-552-6579
penniw@pacbell.net
COLORADO
Bill Bass
303-753-0070
wmbass@ix.netcom.com
Cindy Furst
970-667-5343
cindyfurst@msn.com
Roy Parker
303-470-6699
roypar@comcast.net
CONNECTICUT
Francoise Lampe
203-431-1455
wmfgL@sbcglobal.net
Bob Hammond
203-426-2772
Rhamm17@aol.com
DELAWARE
Karen Pindzola
717-845-5937
kpindzola@yahoo.com
FLORIDA
Ft. Lauderdale Area
Charlie Koch
954-476-8726
Bonnie143@bellsouth.net
Theo Vagionis
954-564-9262
wesport2@msn.com
Gail Murdough
772-564-9910
golphin1@comcast.net
Tallahassee
James O'Neil
850-656-5586
jmotlo@comcast.net
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 Skillikorn
808-891-2882
jLsLs@aol.com
IDAHO
Eastern
John Stanger
208-529-4462
johns@dolefresh.com
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
Southern IL
Rocky & Margie Lindsey
502-836-7779
rocky.lindsey@insightbb.com
INDIANA
Ron Payne
937-349-4344
revronpayne@embarqmail.com
Marion Petry
937-438-8850
mLpetry123@earthlink.net
Southern IN
Rocky & Margie Lindsey
502-836-7779
rocky.lindsey@insightbb.com
KENTUCKY
Rocky & Margie Lindsey
502-836-7779
rocky.lindsey@insightbb.com
Northern KY
Ron Payne
937-349-4344
revronpayne@embarqmail.com
Marion Petry
937-438-8850
mLpetry@earthlink.net
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
peterdboyse@earthlink.net baboyse@earthlink.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
John Stanger
208-529-4462
johns@dolefresh.com
Barbara Britschgi
208-522-2130
bbritsc2@cableone.net
Regional Contact:
Cindy Furst
970-667-5343
cindyfurst@msn.com |
NEBRASKA
(area not currently served by support group)
Regional Contact:
Cindy Furst
970-667-5343
cindyfurst@msn.com
NEVADA
Eastern
Gerri McDonald
801-484-0360
gerri-sLc@comcast.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
(area not currently served by support group)
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, Central & Western
Gail Burgie
585-248-3609
ghburgie@mymailstation.com
NORTH CAROLINA
Bob Zehner
804-796-3571
bobnbetsz@comcast.net
NORTH DAKOTA
(area not currently served by support group)
Regional Contact:
Cindy Furst
970-667-5343 Cindyfurst@msn.com
WESTERN OH, E. IN
Ron Payne
937-349-4344
revrpayne@embarqmail.com
Marion Petry
937-438-8850 mLpetry@verizon.net
OKLAHOMA
Western
(area not currently served by support group)
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
Marcia Klepac
412-421-2437 marciaklep@hotmail.com
Shariann Hall
330-533-4921
shari19@juno.com
SOUTH CAROLINA
John & Paula Austin
803-644-6002
jhaustin@bellsouth.net |
SOUTH DAKOTA
(area not currently served by support group)
Regional Contact:
Cindy Furst
970-667-5343 Cindyfurst@msn.com
TENNESSEE
Central & Western
Bill Paul
901-767-6630
biLLpauL1@juno.com
(area not currently served by support group)
Regional Contact:
Myrna Daniel
706-539-2866
mdmermer@yahoo.com
TEXAS
Dallas
Jerry Fleming
972-867-5102
NTWMSG@verizon.net
Houston
Barbara & John Manousso
713-840-0828
manousso@hal-pc.org
Western
(area not currently served by support group)
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
Peg Horton
253-874-8820
Peggy.horton@comcast.net
WASHINGTON D.C., NORTHERN VA
Catherine Naylor
301-229-0319
catherinenaylor@verizon.net
WISCONSIN
Dan Lotts
920-295-3018
danltts@aol.com
Western WI
Michelle Blazek
651-730-0061
mandsblazek@aol.com
WYOMING
Roy Parker
303-470-6699
roypar@comcast.net
Bill Bass
303-753-0070 wmbass@ix.netcom.com
Regional Contact:
Cindy Furst
970-667-5343
cindyfurst@msn.com |
INTERNATIONAL
AUSTRALIA
Gareth Evans
WMozzies-owner@yahoogroups.com
CANADA
Alberta
Cam Fraser
403-281-8278
cmfraser@shaw.ca
Alberta
Stu Boland
403-281-0271
Stu_boland@hotmail.com
Halifax
Susan Gagnon
902-446-9533
sgagnon@eastlink.ca
Montreal
Sandra Proctor
450-672-4336
sandra.proctor@sympatico.ca
Ottawa
Terry Cherry
613-596-1413
terry@tccherry.com
Toronto
Arlene Hinchcliffe
905-337-2450
wmfc@noco.ca
Vancouver
Charlene Kornaga
604-487-1100
dennischarlene.kornaga@
shaw.ca
FINLAND
Veikko Hoikkala
+35 8500 48 4864
veikko.hoikkala@finnforest.com
GREECE
Alexia Kapralou
+30 210 6858574
akapralou@gmail.com
INDIA (area not currently served by support group)
Regional Contact:
Sanjeev Kharwadkar
swkharwadkar@yahoo.co.in
ISRAEL
Moshe Kwart
+97 254 227 0527
UNITED KINGDOM
Nigel Pardoe & Cheryl Luckie
+44 020 8579 8120
info@septemberservices.com
Sussex
Mike Dewhirst
+44 1323 841735
mkdewhirst@yahoo.co.uk
Birmingham & West Midlands
Geoffrey Willsher
+44 0121429 1038
willsher.s@btinternet.com
