What is a Support Group?
The very best part of AXYS is our members and the support we share. Although we periodically gather for national conferences and major events, these occur relatively infrequently. Local support groups provide a more frequent opportunity for members to meet, share information, compare experience and provide mutual encouragement.
Support group practices vary from location to location and are decided upon by the needs and interests of the members themselves. Some groups meet in member’s homes, others meet in community meeting spaces or in hospital conference rooms. Some groups meet only once or twice a year, while others meet every few months. Some meetings are held in the evening, some in the afternoon. In every case, these periodic meetings provide an opportunity to learn more about the condition. But most importantly, local support group meetings provide an avenue for sharing personal experiences, something that is difficult to find in other venues.
What Happens at Support Group Meetings?
A common activity in all groups is sharing personal history and medical experience. Every member has a chance to describe his or her journey from receiving a diagnosis for a condition that few people ever heard about before, and to ask questions about his or her particular situation. For most members, this period of sharing is the heart and soul of a support group experience.
Support group meetings may also consist of invited presentations by -
- medical specialists knowledgeable about X and/or Y chromosome aneuploidy
- general practitioners with information on how to relieve the more common symptoms of these conditions, or to combat treatment side effects
- nurses or other medical professionals who can explain blood tests and lab reports
- nutritionists and complementary health practitioners
Depending upon the group, a meeting may also include a report about AXYS activities or about local fund raising efforts. Many groups include snacks and drinks at meetings; some groups go out for dinner together at a restaurant following the meeting; some groups hold potluck luncheons or dinners. All groups provide an opportunity to get to know other individuals living with X and/or Y chromosome aneuploidies, their families and others who care for them.
Locating a Support Group / Forming a new Support Group
AXYS also encourages new support groups, and we wish to provide assistance in any way we can. Although our database is confidential, we will work with you to get the word out in your local area that you are interested in establishing a new group, and help you to get in touch with anyone of these AXYS members who expresses an interest in knowing more about this or taking part. AXYS will also supply packets of information about the X and/or Y chromosome aneuploidy conditions we support to distribute, ideas on how to launch and promote a group, and help with programs and procedures. All it takes to start a group is a volunteer willing to take the time and spend the energy to organize the first few meetings.
Please let us know if you may be interested in starting a local support group, and learn how AXYS can assist you achieve your goals.