Forming an IC Support Group
The structure of your IC support group may depend on a variety of factors including:
- Your proximity to different types of medical and meeting facilities
- The needs of IC patients in your area
- The number of people available to help
- Your own interests and abilities
Are Support Groups Considered a Charity?
Most support groups operate as informal gatherings, and as such, “donations” provided to the group are not considered tax deductible. If you feel you would like to incorporate as a charitable organization, please visit www.irs.gov/charities/index.html to learn more.
Traditional Support Groups
For traditional in-person support group meetings, start by asking yourself these questions:
What days and times are good for meetings?
This will depend on your schedule and the preferences of group members. Most support groups choose to meet on a weekday in the evening, but others have found that more patients can attend if they schedule meetings on Saturday or Sunday afternoons.
How often are meetings held?
As the leader, this is up to you and your schedule. Do you have the time and energy to plan monthly meetings or would you rather meet quarterly? If you do not currently have a co-leader, you may want to keep the number of meetings to a minimum at first, expanding as you get more volunteers to help. Most people find that meeting once a month (schedules permitting) is sufficient to keep optimum interest and attendance. Others decide to meet every other month, have quarterly meetings, or monthly meetings in the spring and fall with a winter and summer break.
How long do meetings usually last?
The majority of support groups seem to meet for about an 1 ½ to 2 hours, but some groups that only meet quarterly may schedule more time, allowing for additional speakers and time for patients to share with each other.
Where can you hold your meetings?
Have your schedule handy when you call to find a meeting location. Many hospitals, medical centers, physicians’ office buildings, churches, libraries, and community centers provide rooms for support groups for little or no charge. Be prepared with your specific request and have information on IC handy when calling to request a meeting space. You will be surprised at how quickly you’ll be able to secure something!
Some things to consider are: the size of the room, proximity to a restroom, handicap accessibility and how many major access roads are close to the building. It is best to find a meeting place, and then stick with it. In other words, try to have your meeting at the same location each time.
Are you comfortable working with the technology required by some speakers?
Some speakers prefer to use PowerPoint slides, a projector, or other visual media when giving presentations. If you’re not comfortable working with these types of technology, do you have someone you can call on for help if you need it?
Find a Partner
Find a partner (or two) to help. Different leaders not only bring different talents to the leadership team, but if you are an IC patient as well as a support group leader, it is always nice to have someone who can take over the meetings when you don’t feel good.
Remote Support Group Formats
Not all support groups meet in person. In fact, your first contact with patients is likely to be over the phone. Patients or family members may call simply to learn about your meetings or they may need additional information. Often, they just need to talk. Many IC support group leaders provide support strictly via the phone. For more information, see Providing Phone Support.
Other remote support group formats would include email lists, websites, blogs, and social networking forums such as Facebook and Twitter. In these cases, your group’s presence can be made either public or private, allowing you to control the people who have posting privileges. These, “virtual” support groups are great for patients who live in rural areas and for patients who find traveling difficult. Many IC support groups that have in-person meetings also use these virtual systems to supplement their support between meetings and advertise a calendar of events. For more information, see: Online Resources.
Regardless of how you schedule your meetings, it is important to be consistent in order to encourage attendance. Setting a schedule in advance (such as meeting the third Thursday of each month) may result in higher attendance than just scheduling meetings on the fly.
Revised Monday, August 31st, 2015