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