STEPS FOR STARTING A
KLINEFELTER SYNDROME SUPPORT GROUP


By starting a support group, you’ll be helping out many people, including yourself!

Things you will NEED:

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

  • AAKSIS or KS&A 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.  As far as rewards, there isn’t anything in my eyes that could be as rewarding than working to setup and maintain a Klinefelter Syndrome/XXY support group.  The reason I initially setup 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, all of the positive feedback and all of the help and benefit that others were gaining from this, I knew I had to continue.  I mentioned about the 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 the passion and the drive.  Initially, I started the group for a selfish reason - for myself because I needed support.  But the real reason I have concluded is for all of you who need a friend who has Klinefelter Syndrome/XXY and someone to talk to and tell them that it is okay and they no longer have to feel alone.  I’m going to end here because I could talk all day about Klinefelter Syndrome, the support group, and so on.  By starting a support group, you’ll be helping out a lot of people, including your son and/or yourself. If you have any questions, you are welcome to email me

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Last updated on August 1, 2013