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Winter 2005/2006 Volume 6, Issue 7:
2005 Support Group Recap
By Andrew Lebkuecher
Director of Support Groups
As the IMF embarks on a new year, it serves well to look back at the accomplishments of 2005. It was an exciting year. Robin Tuohy, Kelly Cox, and I made visits to about a third of the myeloma support groups around the country. This was a very reward

As the IMF embarks on a new year, it serves well to look back at the accomplishments of 2005. It was an exciting year. Robin Tuohy, Kelly Cox, and I made visits to about a third of the myeloma support groups around the country. This was a very rewarding experience for us, and the response to our visits has been overwhelmingly positive. We traveled to several groups to assist them with Bank On A Cure "Swish & Rinse" DNA parties.

The IMF welcomed several new support groups in 2005, and we are working with more that are about to make their mark in their local myeloma communities. It is very exciting that most of the new groups are in areas of the country that previously did not have myeloma support groups!

In 2005, many support groups organized and held successful events, including the first Southwest Symposium, the first Connecticut Myeloma Week Kick-Off Info Day, and several fundraisers. As we look ahead to the many exciting events slated for 2006, we look forward to seeing more of our friends, old and new, at group meetings, fundraisers, and seminars.


In 2005, the Phoenix myeloma support group celebrated its 7th anniversary. It was a very exciting year. The Mayo Clinic in Scottsdale expanded their myeloma department to three specialists, which has helped members of the group to have better access to clinical trials and other progressive treatments for myeloma. The group also entered a partnership with the Tucson support group and the Arizona Myeloma Network, which facilitated the first meeting of the Southwest Symposium for Myeloma. The symposium was held in Phoenix, and it was a great success.


The Arkansas support group serves patients, caregivers, family members, and friends who are dealing with blood-related illnesses, although most of its members are coping with myeloma. The group is facilitated by two social workers from the Myeloma Institute for Research Therapy at the University of Arkansas for Medical Sciences: Harriet Farley, LCSW, and Lenore Arent, LCSW. The Arkansas group was created primarily to offer patients and caregivers a community of trust and caring in which they can explore the emotional impacts of coping with their disease.


The San Diego myeloma support group was founded in 1997 with 6 members. The group's membership now includes over 60 patients, and is continuing to grow. With Captain Fred Gloor at its helm, the San Diego support group has celebrated 8 years as a proactive member of the myeloma community.


The Connecticut Multiple Myeloma Fighters held their inaugural meeting in the Spring of 2001 at the Prospect Library. In 2005, the support group held an "Information Day," which served as a kick-off event to the IMF's Myeloma Awareness Week. The event featured presentations by Dr. Ruben Niesvizky (Director of the Multiple Myeloma Program at New York Presbyterian Hospital), Dr. Sundar Jagannath (Chief of the Multiple Myeloma Program at St. Vincent's Comprehensive Cancer Center), and Susan Wall, a stress management consultant and yoga therapist. The event was profiled in several newspapers and on broadcast radio. Local businesses contributed great raffle items, with all proceeds benefiting the IMF. The Leever Cancer Center in Waterbury was so impressed with the support group's efforts that it offered them a new "home" for its meetings!


The Multiple Myeloma Group of Palm Beach, Martin, and St. Lucie Counties was started in May of 2005. The group now has a roster of 70 patients, with an average of 40 attending each meeting. The Multiple Myeloma Group of Palm Beach, Martin, and St. Lucie Counties enjoys a productive partnership with the Miami myeloma support group. The two support groups frequently share speakers and other resources. On December 15, the group's luncheon meeting featured guest speaker Patty Rhee, an oncology pharmacist at the VA Medical Center in West Palm Beach.


The Minneapolis/St. Paul Myeloma Support Group originated in 1996 with five members who gathered at the home of one patient. They offered their personal experiences as support to one another and took comfort in the information provided by others coping with the same disease. Today, the group has over 90 regular participants. Meetings are held monthly and are facilitated by Helen Berg and Pat Harwood.

The Stillwater support group is new to the myeloma community. At present, the group consists of 15 members from both Minnesota and Wisconsin. A recent meeting featured a guest speaker from the local hospital who addressed the topic of diet and nutrition for cancer patients. The group's next meeting is scheduled for March of 2006.


The membership of the Kansas City support group has grown in the past year. It now includes about 20 regular monthly attendees. In September, Dr. Daniel R. Kloster visited the group to make a presentation on the topic of post-shingles neuralgia. In November, IMF's Greg Brozeit visited the group to present an update on advocacy. In December, the group celebrated the holidays with a dinner party at a favorite Italian restaurant. And, all three of the group's recent transplant patients continue to do well!

The new multiple myeloma support group in St. Charles is off to a great start. The group held its first meeting in September with just 4 participants. To date, the group has already grown to include 11 patients and caregivers, and the feedback from the attendees has been very positive.

New Jersey

The Central Jersey MM Support Group held its first meeting in July of 2005. The gathering took place at the dining room table of one of the group's members, with only 4 others in attendance. In October, the group moved to its new meeting place at the Bridgewater Township Library. At almost every meeting, the group has welcomed new members, and has now grown to include 18 patients and caregivers.


Since 1995, the Philadelphia support group mailing list has grown to over 300 and continues to add new members. They have had to move to new larger facilities twice and have instituted more structure to the group, with Maddie Hunter as group leader and Lori Curtis as facilitator and social worker. They have a steering committee of over 15 people who offer their time to keep them organized. They created the positions of treasurer, advocacy lead, fundraising lead, newsletter editor, and more. Because of their strong steering committee, they are able to make transitions in the group's leadership. Most recently, they celebrated Debbie Exner's move to Arizona and welcomed Maddie Hunter. By keeping a yearly schedule of events for each meeting, including speakers, a patient/caregiver split, or just a round table among themselves, they keep the meetings timely and interesting for all. In 2005 they hosted speakers on pain management, caregiving in MM, and the law and MM. Through it all, they feel it is all well worthwhile.

Rhode Island

The Rhode Island multiple myeloma support group held its first meeting in April of 2005 with 5 members in attendance. As of January 2006, the group has grown to include a total of 18 members. In addition, the group has several regular email and telephone participants. Being the only myeloma support group in Rhode Island, the group has entered active contact with patients, caregivers, and medical professionals, and is making great strides in raising statewide awareness about myeloma. The group has been very successful in recruiting professional speakers, distributing IMF educational materials, and reaching out to hospitalized and homebound patients with phone calls and personal visits.


The Chattanooga myeloma support group was started by Tommy Tonkin in 2002. Tommy lost his battle with myeloma in September of 2005, but his wife has continued her involvement with the group in Tommy's honor. Carroll Tonkin and Kim Shank, an oncology nurse at the Cancer Resource Center at Memorial Hospital, now run the support group. In 2005, the group hosted meetings featuring topics such as "Strength for Caregivers," pain management, nutrition, and stress-reduction techniques. Many of the group's members participated in the IMF's Bank On A Cure® program and some attended the IMF Patient & Family Seminar in Atlanta.


The Houston Area Multiple Myeloma Support Group was started by Norma Jones in January 1998. The first meeting was in Norma's home with about 15 members attending. The group now meets in the American Cancer Society offices and membership has grown to approximately 150! About 30 to 70 members attended each meeting in 2005. The group hosted talks given by Dr. Brian Durie, IMF's Susie Novis, and Dr. Michael Wang (a myeloma specialist with the M. D. Anderson Cancer Center). In 2004, during Norma Jones' illness and recuperation, the group elected to rename the organization The Norma H. Jones Multiple Myeloma Support Group.

From its inception, the North Texas Myeloma Support Group has been dedicated to serving the local myeloma community with support, comfort, information, and friendship. In 2005, the group hosted a number of guest speakers. Maureen Carling, RN, gave a presentation entitled "Pain CAN and SHOULD be Controlled," which was very enlightening. Dr. Douglas Won, a spine surgery specialist at UT Southwestern, gave a presentation entitled "Metastatic Bone Disease and Multiple Myeloma," which focused on kyphoplasty. These presentations can be viewed at the group's website http://northtexas.myeloma.org. Additionally, the North Texas Myeloma Support Group hosted a Bank On A Cure® event and gathered approximately 30 samples for the IMF research program.


The Burlington group held its first meeting in May of 2005, with 7 myeloma patients plus family and friends in attendance. At present the group membership has doubled to include 14 myeloma patients. The group's first invited guest speaker was IMF's Robin Tuohy. Everyone enjoyed listening to her very much and they are still talking about it!


The Multiple Myeloma Network for the Blue Ridge has been meeting for over three years. The support group is active in myeloma education and advocacy, and distributes a monthly newsletter. The group was recently profiled in the Roanoke Times for its work in the Virginia myeloma community. In December, the Multiple Myeloma Network for the Blue Ridge celebrated Christmas together at their regular meeting at Our Lady of Nazareth Catholic Church in Roanoke County.


The Northwest MM FIGHTERS! support group's motto is "FIGHT ON!" The group includes patients, caregivers, and families from Washington, Alaska, and British Columbia. Founded in 1997 with 5 members, the MM FIGHTERS! now serve 150 member families. The main emphasis of the group is to disseminate information. The Northwest MM FIGHTERS! maintains an active email list, and sends out monthly updates on myeloma treatments and group activities. The group's monthly meetings frequently feature speakers and video presentations. Special events in 2005 included a summer potluck picnic and a holiday open house.


The biggest achievement of the three Wisconsin support groups is hosting the statewide patient and family educational seminar. In 2005, this event took place for the third time! Over 200 attendees gathered in Milwaukee in November. Dr. David Vesole, who had relocated to St. Vincent's Cancer Center in New York, returned to Wisconsin to participate in the seminar as a presenter and to visit with many of his former patients. The full program included two other physicians, a nurse, and a patient panel. IMF Director of Support Groups, Andy Lebkuecher, also attended.

Members of the Racine myeloma support group have continued their very successful cell phone collection drive, and have now shipped out a total of over 2,000 phones! Half of the proceeds from the drive go to support IMF programs, the other half of the proceeds supports various group efforts, including the statewide patient and family educational seminar.

Note: The 2006 IMF Support Group Leaders Retreat will take place May 19th through May 21st in Scottsdale, AZ. If you have any questions about the retreat, or wish to find or start a myeloma support group in your area, please contact Andrew G. Lebkuecher, IMF Director of Support Groups, at imfsupport@charter.net.

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