The IMF Support Group Team is here to help!
Joanie Borbely
Kelly Cox
Andy Lebkuecher
Robin Tuohy
jborbely@myeloma.org
kcox@myeloma.org
alebkuecher@myeloma.org
rtuohy@myeloma.org
Through a network of over 100 myeloma support groups, the IMF seeks to ensure that patients and
families have local access to support and information.
The IMF is available to help you in many ways; here are just a few to get you started:
Develop outreach letter and flyer for the group
Assist in outreach with mailing to local patients/caregivers/oncologists/hospitals
Provide direction and ongoing guidance in starting, maintaining and sustaining a group
Annual visit to group
Free IMF publications/information/support
Provide annual DVD of an IMF Patient & Family Seminar
Promote group on IMF website and publications
Basic website template available for the group
Free registration at IMF Patient & Family Seminars for support group leader
Communication with other Support Group Leaders via exclusive IMF Extranet
IMF Ambassador Program
IMF Annual Support Group Leaders Summit
Logistics to consider when starting up a myeloma specific support group:
Location-secure a convenient place for the meeting as soon as practical. Consider parking availability
and handicap accessibility. Some suggestions are hospitals, community centers, libraries, churches.
Date/Time-pick a date and time that is convenient to you, taking into consideration when the best
time may be for others to attend the meeting. Groups typically meet once a month for two hours.
List the group's meeting date, time and place in your local newspaper's health section (free). Involve
local radio/tv to help create awareness of the group.
Use the IMF's Advocacy Action Center Media Guide to find and contact local and national media
(www.advocacy.myeloma.org).
CONTACT US! WE ARE HAPPY BE OF ASSISTANCE!
1-800-452-CURE
www.myeloma.org
"KNOWLEDGE IS POWER!"
Pointers on How to Start a Multiple Myeloma Support Group
The power of psychosocial support for cancer survivors has been well documented. Among their many
benefits, support groups can increase knowledge, decrease anxiety and create a sense of community.
Many multiple myeloma survivors have difficulty finding support groups in their areas, and many express
a desire to attend a group specific to their type of cancer. No support group in your area? Consider starting
one. It takes dedication and perseverance but can be an extremely rewarding experience.
Here are 10 tips to help you get started with a myeloma specific support group
1. Make a commitment.
Leading a local support group is rewarding but demands time and energy. Consider pairing with others to
co-lead the group. Their assistance and support may ensure your group's success.
2. Identify your audience.
Those currently in treatment? Those who have finished treatment? Friends, family members and
caregivers? All of the above? Be clear from the start why your group is forming and whom you'd like to
attend.
3. Determine the group's objectives.
Contact leaders of existing support groups for advice using the IMF's exclusive Support Group Leader
Extranet. Brainstorm with your co-leaders to develop topics for your group members to discuss. Decide
where, when and how often you will meet, any supplies you will need, and your specific goals. Set
priorities and delegate responsibilities.
4. Build a local network.
Spread the word about your group by posting notices at doctors' offices, churches, community centers, on
the internet and wherever else you might reach your target audience.
5. Provide information.
IMF publications from our vast library including information on treatment options, disease management,
quality of life and IMF services; are available free of charge.
6. Be adaptable.
If you have selected a particular topic to discuss at a meeting but the attendees are clearly interested in
talking about something else, go with it. Each group will form an identity, and as a leader you'll need to
learn to be flexible while still keeping on topic.
7. Meet consistently.
Keep your meeting at the same place, day and time. Have your meeting even if other members do not
attend. It can require patience to form a dedicated group. Circulate a sign-up sheet at each meeting, and
provide a written reminder about the group's next meeting.
8. Give yourself time.
It will take time for your group to get going. Members may come and go in the beginning, but if you keep
at it, you will eventually have a core group as well as other members that attend on a "as needed" basis.
9. Keep it relevant.
Keep the discussion on track with your goals so that members stay involved.
10. Ask for help when needed.
Know your limitations. It can be a challenge to maintain cohesion and inclusion in a group. Members may
require more help than you can provide. Anticipate such difficulties and know that you can turn to the
IMF for assistance and direction.