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
• 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
• 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
• 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
• 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.