We are international

Report from the Sixth Annual Support Group Leaders' Retreat
July 8-10, 2005
By Robin Tuohy

Note: This is an annotated version of a story that will appear in an upcoming Myeloma Today. If you have not yet subscribed to the IMF's free newsletter, click here to take this opportunity to do so and read Robin Tuohy's full report from what was an informative and inspiring meeting that should benefit all who are members of myeloma support groups around the country and world.

The Sixth Annual Support Group Leader Retreat was held at the R. David Thomas Conference Center at Duke University, July 8-10, 2005. This year’s retreat was our biggest yet with over 100 participants including speakers, caregivers and staff. In addition to our “veteran leaders," we are very pleased to acknowledge the large contingent of new leaders and new groups from the U.S. and Canada!

For those of you that have not yet had the pleasure of attending the Retreat, I can tell you that it is like a family reunion. As in our own families, our “myeloma family” is one that we did not choose – but we care and want to help each other in our journey. To those that we have become close with, we give hugs and catch up with each other; to those that we have just met, we give hugs and learn about each other. We are all together in this with a common bond: multiple myeloma and how to fight the beast.

The weekend began on Friday afternoon with Dr. Durie conducting an informative question and answer session with the leaders and detailing important support issues in 2005. It was a total “A to Z” on myeloma from staging and initial diagnosis to relapsed disease and what choices we now have. We then enjoyed cocktails, dinner and a movie! The IMF Research Initiative DVD focuses on Bank on a Cure®, Circulating DNA and Proteomics. Greg Brozeit spoke with us regarding advocacy and how we can participate. His main message is that all cancer groups need to work together to get things accomplished in Washington.

One of our presenters was Vicki Anderson Ferraro, leader of the Miami Multiple Myeloma Networking Group. Vicki spoke on “Starting and Maintaining a Support Group, " and left us with this question: "If you don’t know what you want to accomplish, how will you monitor/measure if you are successful?"

Marcia & Jerry Sawyer, co-leaders with the North Texas Myeloma Support Group gave a presentation on “Communications: Newsletters and Websites." Their group uses a combination of a detailed website, newcomer packets and newsletters. Additionally they now have a “patient voicemail” telephone number to enable information seekers to contact them (972) 504-6307. Check out their website at: www.northtexas.myeloma.org.

Chuck Koval, leader of the Madison, Wisconsin Support Group collaborated with the Racine and Milwaukee Support groups in a “Collective Group Seminar." This was the first of its kind: A statewide education day for multiple myeloma! They are already planning next year’s event for November 5; so if you are in the area please stop by to see what it is all about!

Mike Katz, co-leader of groups in Manhattan and White Plains conducted a clinical trial discussion conference call with ECOG Myeloma Committee Investigators. The objectives of this session were to provide patient perspectives on the most important questions that need to be answered with clinical trials and to discuss concepts for a potential trial currently under discussion.

Back for a second time was our friend Maureen Carling, RN. Maureen commanded our attention right from the start. She spoke on a subject that most of us deal with on a daily basis – pain management. Maureen ended with this: Pain CAN and SHOULD be controlled. You have nothing to fear but fear itself!

To close the afternoon we took a deep breath, listened and interacted with Greg Pacini, a licensed professional counselor. That discussion led us to a cleansing of emotions; the perfect ending to a long but inspirational day.

After a fabulous dinner we were treated to the uplifting words of Tom Bay. After 20 plus years of interviews with individuals from all walks of life, Tom has collected a list of 13 traits that winners all share, including discipline, vision, purpose, and enthusiasm. Tom feels that the IMF staff, patients, and caregivers are the personification of these traits. He tells us that we are the “Eagles” that soar above the problems that the “Ducks” quack about!

On Sunday we wrapped up the weekend with Dr. Durie and Mike Katz providing us with an overview of Osteonecrosis of the Jaws in Myeloma, increasingly recognized as a complication of bisphosphonate therapy.

David Smith, Vice President, Operations ended the morning with an update on Bank on a Cure® and a prevention grant from the Centers for Disease Control. The Bank is the first international cooperative DNA bank for genetic analysis – to allow physicians to better understand patient treatment response and to find a cure. As for the Centers for Disease Control prevention grant, it is a three-year initiative to fund programs that target specific populations, such as African-Americans, the elderly, and the under- and un-insured, on the importance of education and awareness regarding hematological cancers. The IMF has available a video, brochures and information.

As the weekend came to an end, we were invigorated, inspired and ready to go back to our groups and share our experience! I wholeheartedly encourage each and every group leader, whether you are facilitating a new group or an established group, to attend next year’s Retreat. I guarantee you will not only learn more about this disease but the friendships that you will form will be invaluable. Please keep an eye out for next year’s invitation to the Retreat and sign up early to attend! Remember, Knowledge is Power!

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