Support groups are a valuable resource for patients, survivors, and caregivers to connect to one another, and to share information and feelings. Starting a support group is easier than you think. But before taking on this responsibility, think carefully about whether you have the time to commit to coordinating regular ongoing meetings - people will be counting on you! We strongly suggest finding another dependable person to help you co-lead your support group to help share the responsibility.
With that said, know that you will be directly making a BIG difference in the lives of those affected by brain aneurysm, AVM, and other vascular malformations of the brain.
- Does a support group already exist in your area? Contact your local hospitals or clinics, or do a search on the internet to see if a support group already exists in your area. TAAF also provides information on support groups in in our support resources: support groups section.
- Find a co-leader, or two. Even for the most dedicated support group leader, there will be times when you may not be able to attend. Having one, or even two, co-leaders will help to ensure that at least one of the support group leaders is available to lead every single support group meeting. Having co-leaders also helps when thinking about topics for meetings, and to help share the responsibilities in publicizing, and hosting your support group.
We strongly recommend enlisting a local medical professional to help co-lead your support group. This person will be a great resource in 1) accurately answering medical questions asked by the group, 2) identifying topics and/or recruiting speakers that may be of interest to the group, 3) identifying meeting space at his/her associated medical facility, and 4) publicizing the support group to patients that may be interested.
- Decide on the timing of your meeting. You will want to decide on the meeting date(s), times, frequency, and length of each meeting. A convenient schedule is to designate a certain day of the month (for example the 1st Thursday of every month from 6:30pm - 8pm). It may be helpful to host the first meeting, and ask the group for a mutually convenient time to help establish the ongoing schedule for meetings.
- Find a location. A quiet location that you can regularly use for every meeting with plenty of parking makes it convenient and easy for participants. Some potential suggestions are listed below, however you may have other community resources available to you and we encourage you to use spaces that make sense for the convenience of your group.
- Hospitals, medical centers, or clinics with meeting space
- Community centers
- Public Library meeting rooms
- Schools
- Condo/Apt complex community rooms
- Publicize your support group. Create a flyer for your support group. Post the flyer at local community bulletin boards. Ask local medical facilities, particularly neurovascular units, to post your flyer in waiting rooms. Your medical professional co-lead may be able to help with this. Make sure to include in your flyer:
- Aneurysm and AVM Support Group
- Date
- Time
- Location
- Contact information
Don't forget to let TAAF know! We'd be happy to post your support group information on our website.
- Host your support group. Be prepared to answer inquiries about your support group. Some people will be shy or nervous about attending a support group for the first time.
It is often helpful to have a topic for each meeting for participants to come prepared to discuss. Work with your co-leads to think of potential topics for meetings. Your medical professional co-lead may be able to invite speakers on topics of interest for your group.
Make sure to begin and end your meetings on time.
Suggested format for the meeting:
- Individual introductions: 15 min
- Speaker: 45 min
- Questions & Discussion: 30min
Tips for your first meeting:
- Ask the group for best times to meet to help establish ongoing meeting timing
- Ask the group for topics of interest for future meetings