support

How to Start a Support Group

Years ago, we included a sample press release for publicizing a support group in the back of our book, Overcoming Depression. Apparently scores of groups mushroomed using that one-page press release and the instructions on how to reach the media, and we would like to offer that same help to parents and professionals who would like to start groups in their local communities.

While online support groups are invaluable for daily support, and you don’t need to find a sitter and leave home, an in-person support group increases your chances of finding friends you can socialize with (and call when you’re feeling blue), and provides access to resources in your own community. Plus, you may find you can arrange stress-free playdates for your child with other children who have the disorder (it is so important that our children don’t grow up feeling they are the only ones who have bipolar disorder), and you can be absolutely sure the other mothers in the support group won’t be judging your child’s behavior and wondering what’s going on in your home.

How To Form A Support Group

Initially, you can print up a flyer that says nothing more than: “If You Are Interested in Joining a Support Group for Parents of Bipolar Children, Email me at…………”

You can put this notice in therapists’ and pediatricians’ offices or find out the name and address of social workers who work in a nearby children’s psychiatric unit of a hospital and ask them to pass the flyer along to families who have children diagnosed with the disorder.

Also, you should list the announcement of the group start-up at http://www.bpkids.org/supportgroups. If you put a posting under your state at this site, other parents looking for a group can contact you. The posting can be general and list your name and email address and a comment such as: “Call (or email) Amy to find out more about the group–where and when it meets and how to join. Everyone is welcome.”

As responses come in, get a feeling for where, when, and how often people are available to meet. Get contact information for each person. Email is an effective and easy way to contact many people at once. After you receive your first few responses, make decisions regarding meeting locations, dates and times. Evening meetings work well for parents who work. Meetings should occur at least once a month to be effective.

Find A Meeting Location

A good location for a support group meeting is a quiet place, with enough room for everyone to sit comfortably in a circle. You do not want any non-group members to be able to overhear what is being said in a meeting. Rooms in local libraries are usually available for meetings such as these. Check with other group members who may belong to a club, a church or synagogue or other organization that will let you use their facility.

Once you have a core group of people and have decided where and when you’ll hold the first formal meeting, you should advertise your fledgling group to the surrounding community. You can easily get local newspapers in the area and radio and cable television stations to write about or announce the birth of the group but you need to write a press release, and to get an idea how to go about gathering the names and addresses of editors and producers.

Writing a Press Release

An entire communications network that needs ideas and information exists in each community in this country. The editors–the people who receive the notices of events happening in the community–will view you as a reporter in the field, but there are contact formats and skills that one must understand in order to gain coverage. If you send a correctly constructed, properly worded press release, you increase the chances of obtaining publicity for your organization and spreading the message to the public.

The press release is the announcement of your new organization, its intentions, and information concerning its first meeting. It should basically follow the format of the sample release below, but there is plenty of room for variation in the body of the copy. Tell the editor what is happening–when, where, and why. Then follow this information with some background or facts.

The person who is listed as the contact in the upper right-hand corner should be accessible, available, and able to speak articulately about the group and early-onset bipolar disorder should an editor call for more information or for an interview.

If your new group has letterhead stationery, the release should be typed double-spaced on it; if not, a plain bond paper will do as well. It can be duplicated on a copy machine. The release is typically mailed out six weeks before the scheduled meeting, but it’s always a good idea to check the deadline requirements for each publication.

To compile a list of the editors and announcers you should contact with the release, call the general numbers of the newspapers and radio and television stations (check your local Yellow Pages under “Newspapers,” “Radio” and “Television–Cable”). Explain that you wish to publicize the starting-up of a support group for parents of children with bipolar disorder and that you need to know who handles articles on health-related topics and who handles calendar listings for the community events. Send each of these people a copy of the release (don’t forget to get email addresses for email press releases also).

Don’t let it stop there. Follow up within a few days with a telephone call to see whether that editor received the release and to find out if he or she needs any further information. You can be warmer and more immediate on the phone and can tune the editor in, and you might just stir up enough interest to persuade the editor to do an article about your group. This would be a great coup as many people in the community who might really benefit from your efforts can read about the group in the local paper, give you a call, and get involved. Interested physicians and mental health professionals will also know how to get in touch with you and will refer parents, as well as possibly offer their services to help launch the group.

Once the group is launched, send monthly email announcements to the calendar listing editor of each paper so that each meeting is noted by the community.

Sample Press Release Below

Contact: Janice Papolos
(203) 555-4321
jpapolos@jbrf.org
FOR IMMEDIATE RELEASE
July10, 2002

SUPPORT GROUP FOR PARENTS OF BIPOLAR CHILDREN TO HOLD ITS FIRST MEETING–SEPTEMBER 20, 2002

A newly-formed support group for parents of children who have been diagnosed with bipolar disorder will hold its first meeting in the auditorium at St. Luke’s Hospital, 230 Maple Avenue, Newtown, at 8:00 P.M., the 20th of September, 2002. The public is welcome and encouraged to attend.

Bipolar disorder in children is thought to affect over one million children in this country alone, but, it is often mistaken for ADHD or depression. It is estimated that one-third of the children who are being diagnosed with attention-deficit disorder with hyperactivity are actually suffering from early symptoms of bipolar disorder. A recent study that examined children who first had bouts of depression reported that almost 50% went on to manifest the bipolar form of the disorder.

The cardinal symptoms of early-onset bipolar disorder are rapid shifts in mood: the child can veer from irritable, easily annoyed, angry mood states to silly, goofy, giddy elation and then just as easily descend into low energy periods of intense boredom, depression, and social withdrawal, fraught with self-recrimination and suicidal thoughts. These abrupt shifts in mood can occur several times a day. Temper tantrums–rages– that go on for protracted periods and during which the child can become very aggressive are also common, as are grandiose thinking and behavior, racing thoughts, and a decreased need for sleep. These children are very often oppositional and defiant and may also suffer severe separation anxiety, night terrors, distractibility, and impulsivity.

The disorder is thought to be highly genetic, but is eminently treatable with mood stabilizers, therapy and accommodations at school.

Families dealing with such an ill child can quickly become exhausted, traumatized, and isolated, and this new group intends to provide support, friendship information and referrals to the parents and siblings, grandparents and friends. Monthly meetings will feature psychiatrists, researchers, and health professionals who will provide the most current information about the disorder. In addition, there will be smaller “rap” sessions in which parents can tell their own stories, trade information, and give and gain support.

For further information about the group and the meeting please call (203)555-4321.

Amy Sharak, who co-founded the largest support group for parents of bipolar children in the country and which meets in Madison, New Jersey every month passed on some ideas for starting a group and keeping one going:

Growing and Maintaining a Support Group

Communicate with new members. As word of your group gets out, you will have new members contact you. You should have a piece of communication (the “Welcome Letter”) that gives an overview of your group and it’s intent, along with when and where your meetings are held.

Example of a Welcome Letter Via Email:

Dear New Member:

I understand you are interested in the support group for parents of bipolar children. We are a group of parents raising kids with bipolar disorder. We talk about everything from meds and doctors to improving IEPs; and of course the day-to-day stress of raising these children. These parents are the only ones who truly understand what it is like to raise a bipolar child. We meet once a month. Moms and Dads (and other concerned caregivers) invited, but mostly Moms attend.

If you would like to be on my email list, which will provide you with info on upcoming meetings and other area events dealing with raising a bipolar child, I’ll need the following information that will remain confidential:

Your full name
Your phone number
Your email address
Your child’s age
Your child’s gender
Town in which you live

Here’s info on the next meeting:
WHEN: 7:30pm July 9th
WHERE: Madison Community House
25 Cook Ave. – Madison, NJ

If you have any questions, feel free to contact me here or call me at 908-555-2222.

Maintain the Contact

Now that you have a growing list of group members, make sure to keep in contact with them. Soon after a meeting thank them for coming, and let them know when the next meeting will be. A few days before the next meeting, send out a note reminding them of the upcoming meeting. These notes may also contain information such as topics to be discussed (camps, IEPs, etc) so people can bring in printed materials, notice of an area event of interest to parents raising bipolar children, or the announcement of a guest speaker at your meeting.

Helpful Hints

Keep a printed list of all the people in your group, their email address, phone number, age and gender of their bipolar child, and town in which they live. This info is helpful for those questions such as “is there another parent in our group who lives in my town whose bipolar child attends public school?”

Keep an Attendance List

I find it helpful to see, at a glance, those people who are most involved in the support group.

Start a Resource List

This list can contain area psychiatrists, out of district schools, camps, etc. You WILL receive many questions asking you for these resources. I always preface my response with “I can not personally recommend these resources, they are just listed as a starting point for your research.”

For example, here are some resources you will surely want to gather:

  • Child Psychiatrists
  • Child Psychologists or Therapists
  • Adult Psychiatrists
  • Neuropsychologists
  • School Advocates
  • Educational Lawyers
  • Occupational Therapists
  • Therapeutic Schools
  • Tutors
  • Descriptions of Inpatient Units,
  • Community and Wrap Around Services
  • Camps
  • Programs that Do a Good Job with Our Children
  • Recommended Books and Articles
  • Web Sites

To Feed or Not to Feed

Each group is very individual. Some will serve coffee and refreshments; others serve nothing but food for the soul: friendship, information and support.

Good luck with your support group. May it bring solace, sympathy, wisdom and friendship to all who attend.

Amy Sharak
Co-Founder of the Madison New Jersey Parent of Bipolar Children Support Group

Interested in having Dr. Papolos speak at your business/school/community group? Contact us here.