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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. 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.
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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
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 Jblock35@comcast.net
ebsullivan27@comcast.net ORAL CYTOXAN Lou Birenbaum 314-961-5591 lbirenbaum@aol.com
PLASMAPHERESIS Fred Bickle 805-492-4927 Flb134@msn.com
RAD 001 Charles Vassallo 201-947-6977 cvassallo@nj.rr.com
anweinert@gmail.com 760-568-2918
SPLENECTOMY Kathleen Ugenti 631-470-0971 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
CLINICAL TRIALS Tom Hoffmann 501-868-8305 Thh97c@msn.com 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 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 paleybain@aol.com
YOUNG WM Nobby Riedy 650-879-9104 knobby@wildspaces.net Laurabailey64@gmail.com
INTERNATIONAL
BELGIUM Joanna Van Reyn 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)
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 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 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)
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