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
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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
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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)
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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
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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
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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
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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
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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
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