If you have specific questions or need to share or compare information about your unique situation, you are welcome to call or email our dedicated volunteer Telephone and Email Lifeline members.

Patients and caregivers who are willing to share their experiences in specialized areas volunteer to take these calls. In each case, the persons listed below have personal and often extensive experience in the category under which they are listed.

Please understand that these are not doctors or medical professionals and they do not give medical advice or treatment recommendations. However, they often have researched their condition or situation and may be able to assist you in accessing better information or refer you to experts in specific treatments.

If you are a patient with some experience in a specific condition and would like to volunteer to help with the Telephone and Email Lifeline, please contact the Business Office at 941-927-4963 or info@iwmf.com.   We are especially in need of non-English speakers and Lifeline volunteers in other countries where we do not have IWMF chapters or contacts. If you can, please make a difference and volunteer.  If you would like to volunteer, please contact the IWMF business office at 941-927-4963 or info@iwmf.com.

If you can't get to a local support meeting, use our IWMF Telephone and Email Lifeline to call a WM veteran.

The lifeline is seeking volunteers who speak a language other than English.  If you would like to volunteer, please contact the IWMF business office at 941-927-4963 or info@iwmf.com.




 

 

 

THE LIFELINE

February 2010

 

If you can't get to a local support group meeting, use our IWMF Telephone and Email Lifeline to call a WM veteran.  The Lifeline provides telephone numbers and email addresses of IWMF volunteers who will answer questions about their first-hand experience with specific treatments for WM. 

 

*The Lifeline is seeking volunteers who speak a language other than English.  If you would like to volunteer, please contact the IWMF business office at 941-927-4963 or info@iwmf.com.

 

TREATMENTS

 

ALLOGENEIC STEM CELL TRANSPLANTS

            Eileen Sullivan            617-625-6957

            ebsullivan27@comcast.net

 

2-CdA WITH RITUXAN

            Bernard Swichkow       305-670-1984

            theswichkows@aol.com


BORTEZOMIB DEXAMETHASONE & RITUXIMAB (BDR)

            Joe Gallo                     941-493-1809

            galljcon@verizon.net


            Ron Linford                 865-657-9895

            rongl@aol.com


CHLORAMBUCIL
            Janice Stein                  415-346-6620
            janicemstein@aol.com

CLADRABINE with RITUXAN
            
Brent Wingett 805-466-2345
            bwingett@charter.net 

CRYOGLOBULINEMIA

            Fay Langer                   904-625-3135

            fhlanger@gmail.com

 

FLUDARABINE with cyclophosphamide (Cytoxan)

Penni Wisner                415-552-6579

penniw@pacbell.net

 

FLUDARABINE with Rituxan

            Marty Kopin                310-390-1546

            mkopin@yahoo.com

           
            Jerry Block                   301-460-9799

            Jblock35@comcast.net


            Eileen Sullivan            617-625-6957

            ebsullivan27@comcast.net 

ORAL CYTOXAN

            Lou Birenbaum              314-961-5591

            lbirenbaum@aol.com

 

 

PLASMAPHERESIS

            Fred Bickle                  805-492-4927

            Flb134@msn.com

                                               

RAD 001
           
Tom Howenstine          419-542-8921
             howen978@verizon.net



RITUXAN

            Charles Vassallo           201-947-6977

            cvassallo@nj.rr.com


           
James Townsend          352-376-3664

           
            Allen Weinert               603-863-5347

            anweinert@gmail.com  760-568-2918

 

SPLENECTOMY

            Kathleen Ugenti            631-470-0971

           
             
Patricia McCue            239-348-3456 winter

                                                802-468-5779 summer

 

STEM CELL TRANSPLANT

            Howard Donley            307-587-3397

            donleyh@tctwest.net

        

THALIDOMIDE

            Mel Horowitz               518-449-8817

            wmcure@yahoo.com

 

VELCADE

            Jeff Atlin                       905-707-5640

            jeffatlin@hotmail.com

 

 

SPECIALTY TOPICS

 

CAREGIVING

            Lynn Bickle                  805-492-4927

            Flb134@msn.com

           
            Brad Alexander            972-529-2002

 

CLINICAL TRIALS

            Tom Hoffmann             501-868-8305

            Thh97c@msn.com

           
            Guy Sherwood 765-282-4377

guysherwood@comcast.net

 

HEARING IMPAIRED TTY FACILITY

Betty Mc Phee             905-775-3413

bjmcphee@hotmail.com

 

NEWLY DIAGNOSED

            Guy Sherwood             765-282-4377

guysherwood@comcast.net

            
            Sallie Moore                 516-795-3746

            Smoore6042@aol.com

 

SOCIAL SECURITY DISABILITY

            Howard Prestwich        815-233-0915

            prestwic@mwci.net

              

WATCH AND WAIT

            Mel Horowitz               518-449-8817

            wmcure@yahoo.com

           
             
Renee Paley-Bain         203-744-7851

            paleybain@aol.com

           

YOUNG WM

            Nobby Riedy                650-879-9104

            knobby@wildspaces.net

           
             
Bob Bailey      770-664-8213

            Laurabailey64@gmail.com

 

 

INTERNATIONAL

 

BELGIUM

            Joanna Van Reyn
            +32 9 335 46 60
            joanna.vanreyn@cmp-vlaanderen.be


DUTCH SPEAKER

            Lia van Ginneken-Noordman

            00-31-(0)70-3475520

            Ginneken.noordman@wxs.nl

 

FRENCH SPEAKER

            Guy Sherwood

            765-282-4377

            guysherwood@comcast.net

 

            Sybil Whitman

506-450-3970

            hcouture@nbnet.nb.ca

 

FRENCH LANGUAGE TALK LIST

http://sympa.medicalistes.org/wws/info/waldenstrom

 

GERMAN SPEAKER

            Roy Parker (Colorado, USA)

            303-470-6699

            roypar@gmail.com

 

            Sybil Whitman

(New Brunswick, CANADA)

            506-450-3970

            hcouture@nbnet.nb.ca

 

GERMAN LANGUAGE TALK LIST

Http://www.leukaemie-hilfe.de/foren.html?&tx_mmforum_pi1(action)=list_topic&tx_mmforum_pi1(fid)=14

 

SPANISH SPEAKER

            Peter Mitro

            440-247-3460

            stonehill@earthlink.net

 

            Betsy Beazley

            510-527-5827

            betsybeazley@gmail.com

 

            Gladys Mendieta

            215-860-9216

            Gladysmendieta@aol.com

 

            Leon Maya

            865-694-9581

            veraleon@comcast.net

 

SPANISH LANGUAGE TALK LIST

iwmf-talk-espanol-subscribe-request@lists.psu.edu

 

SWEDEN/NORWAY

            Anne Odmark 

+46 18-14 05 13

            ag.odmark@gmail.com

 

NORDIC COUNTRIES TALK LIST

iwmf-talk-nordic-subscribe-rquest@lists.psu.edu

 

  

 

 

UNITED KINGDOM LIFELINE

 

2Cda

            Roger Brown   +44 01285 650107

            Rogerbrown961@btinternet.com

 

FLUDARABINE

            Ken Rideout   +44 1278 782108

            ken@4rosetree.fs.co.uk

 

FLUDARABINE AND RITUXIMAB

            Mike Dewhirst +44 1323 841735

            dewhirst_6@hotmail.com

 

OPTHALMOLOGY

            Terry Betts    +44 01992 583643

            tjb-planning@freeuk.com

 

PLASMAPHERESIS

            Roger Brown   +44 1285 650107

            Rogerbrown961@btinternet.com

 

RITUXAN

            Nigel Pardoe   +44 0208 326 3270

            pardoe@aol.com

 

UK SUPPORT GROUP ONLINE FORUM

            Raphael Altman 

            raltman@btinternet.com

 

 

CANADA LIFELINE

 

CLINICAL TRIALS

Jan Jones          613-722-2385            

janellejones@rogers.com (Ottawa, ON)

 

Rod Anderson              905-372-2410            

rod@rodmer.com (Cobourg, ON)                                         


TTY- HEARING IMPAIRED

Betty McPhee                                                 

bjmcphee@hotmail.com (Bradford, ON)

Fluent in American Sign Language

 

NEWLY DIAGNOSED

     Jeff Atlin     905-707-5640 

     jeffatlin@hotmail.com (Toronto, ON)

 

     Rod Anderson        905-372-2410

     rod@rodmer.com (Cobourg, ON)

 

WAIT & WATCH

Jim Bunton       416-621-7864            

jbunton@sympatico.ca (Toronto, ON)

 

Debbie Irwin                                       

Debbie.Irwin@Mecglobal.com (Toronto, ON)

 

CVP/RITUXAN

Betty Mcphee   905-775-3413            

bjmcphee@hotmail.com (Bradford, ON)

 

Ritwik Ray       416-693-0910            

ritwik@rogers.com (Toronto, ON)

 

Rod Anderson  905-372-2410            

rod@rodmer.com (Cobourg, ON)

 

Debbie Irwin                                       

Debbie.Irwin@Mecglobal.com (Toronto, ON)

 

FLUDARABINE

            Jeff Atlin           905-707-5640             

jeffatlin@hotmail.com (Toronto, ON)

 

Gary Dvorkin                                      

annawill@sympatico.ca (Mississauga, ON)

 

Bert Visheau                                        

visheau@mcmaster.ca (Hamilton, ON)

 

LATEST RESERACH
            
Bert Visheau 905-528-1789
            visheau@mcmaster.ca 

RITUXAN

Rod Anderson  905-372-2410            

rod@rodmer.com       (Cobourg, ON)

 

Gary Dvorkin                                      

annawill@sympatico.ca (Mississauga, ON)

 

Susan Gagnon                                     

suemar3@hotmail.com (Halifax, NS)

 

Bert Visheau                                        

visheau@mcmaster.ca (Hamilton, ON)

 

STEM CELL TRANSPLANT

Olga Anderson                                    

olga.anderson@sympatico.ca (Perth, ON)

 

            Sybil Whitman  506-450-3970

            hcouture@nbnet.nb.ca

VELCADE

Jeff Atlin           905-707-5640            

jeffatlin@hotmail.com (Toronto, ON)

 

Rod Anderson  905-372-2410            

rod@rodmer.com (Cobourg, ON)

 

VETERANS

Jan Jones          613-722-2385            

janellejones@rogers.com (Ottawa, ON

 

Bert Visheau                                        

visheau@mcmaster.ca (Hamilton, ON)