By starting a support group, you’ll be helping out many people, including yourself!
Things you will NEED:
- Lots of time
- A passion for what you are doing
- Drive and determination to make the group work
| I. Setting up the group Do you want to setup the group alone or with others? • Unless you have a ton of time or are very organized, setting up a group can be very taxing. This is where others can be helpful. • You get a varying of ideas, thoughts and opinions, this can be very good but can also create problems if you have disagreements with the others involved • To avoid conflicts while working with others, you should try to make sure they are as sympathetic for the cause as you are, with the same goals for the group | II. Advertising • This can be hard to do before the first meeting. • You can meet a lot of people and spread the word through e-mail, fax, word of mouth and in bulk mailings • Public notices can be placed in newspapers or on television or radio stations • Advertising is a delicate subject - because of the personal nature of Klinefelter Syndrome • Media is a possible outlet - but be careful • Don’t use “KS” in any public reference, it may be misunderstood, use Klinefelter Syndrome or XXY |
| III. Choice of Location and Date Pick a date • This is a very important next step because you are making a commitment • Weekend afternoons are best • Saturday afternoons gives people attending from far distances a travel day on Sunday • You can take a vote at the first or second meeting to decide the best day/time for the attendees Location • Choosing a location can be both a personal choice and a financial choice • If money is an issue then finding a place that will allow you the opportunity to hold meetings for free, is optimal • Choosing a comfortable place is important (both in comfort level of attendees and weather conditions, warm or cold) | IV. Choice of Facility - Choice #1 There are 3 types facilities which are recommended: Choice #1 Medical Facilities/Hospital • Best hours - open all of the time • Usually the fee can be waived • Plenty of parking • Medical personnel can be involved • Can be a good draw for people looking for support groups • Can be a very sterile feeling - can take group a long time to gel and feel comfortable with surroundings • Depending on size of the facility, the group could outgrow its surroundings rapidly |
| Choice of Facility - Choice #2 Choice #2 Public Buildings (i.e. Schools, Libraries, Banks, etc...) • Can usually be used with little cost • Parking isn’t a problem • Needs to be booked well in advance • You are limited by times of being open or closed • Limited by other groups using room • These rooms may lack audio/visual equipment needed for a speaker - but may be borrowed elsewhere | Choice of Facility - Choice #3 Choice #3 Hotel/Motel Meeting and Conference Center • Cost - very big issue - Can be tough to schedule with weddings and other functions at the hotel • Usually plenty of parking • Large capacity available, selection of rooms • Discounts on hotel rooms |
| V. Format for the meeting and guest speaker(s) This will vary on size of the group: • If the group is fairly large -- keep the meeting as formal as possible. Most people need a structure. • If the group is rather small, form a chat group, chairs in a circle works well. • But either way, try to make a comfortable atmosphere Possible scheme: • Introduction by chairperson to the whole group with opportunity for questions • Guest speaker may either speak first or towards end of meeting. • It is better speaking first, because it provides a catalyst for more questions • After the speaker’s presentation and questions, announce the different discussion groups and locations that will start after the brief break. The following group breakdowns generally work the best: • Parents of young children/infants/yet to be born son • Parents of teens • Parents of adults • Klinefelter Syndrome/XXY individuals • Wives/spouses/significant others • Teens, if an appropriate moderator is available Suggestions for each grouping: • It is best to pre-choose a moderator for each group, if possible • Take a break • Break up into discussion groups, as a host try to mingle from group to group • The discussion time is a very important part of this meeting. This is where sharing makes us not feel alone. Try to allow at least 2 hours to talk time. • Keep discussion groups informal | VI. Develop a guest list • AXYS can help you initially by providing you with your first mailing Contact them to discuss what areas you’d like the initial flyer to go to • Contact doctors in your area and ask them to send patients your way • Once established, you can build on contacts in your area to refer people who need assistance |
| VII. Develop a contact person • If many individuals set up this group -- then you’ll want to designate someone or somebody who is very reachable and can be contacted by individuals interested in attending or with specific questions • Remember your name and number will be published, somewhere • You will need a contact phone number for mailings and flyers, you may wish it to be separate from personal use • Use of voicemail or dedicated answering machine may be best | VIII. Design a flyer • A national organization or Stefan Schwarz can assist you in designing the flyer, if you wish • Develop a contact list from your first meeting • National organizations may publish your meeting information in their newsletter and/or on their website • Send out a reminder 6 weeks prior to the next meeting • It is best to have a preselected date for the next meeting prior to the upcoming meeting, if possible • It is important that you establish a mailing list after your first meeting |
An important thing to remember:
I was in your position just six months after being diagnosed. Regarding rewards, nothing in my eyes could be as rewarding as working on setting up and maintaining a Klinefelter Syndrome/XXY support group.
The reason I initially set up a group was for selfish reasons. I initially needed support for myself. But once I started and saw all of the good that came out of it, positive feedback, and the help and benefits that others were gaining, I knew I had to continue.
I mentioned passion and drive earlier in the above table as being things you should consider and will need when starting a support group. They make it a lot easier to continue working on the group. The reason I do this is passion and drive. Initially, I started the group for a selfish reason: I needed support. But the real reason I have concluded is for all of you who need a friend with Klinefelter Syndrome/XXY and someone to talk to and tell them that it is okay and they no longer have to feel alone.
I will end here because I could talk all day about Klinefelter Syndrome, the support group, etc. By starting a support group, you’ll be helping out many people, including your son and/or yourself. If you have any questions, you are welcome to email me.
