Monday, October 20, 2014

Starting A Support Group

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Start a Support Group in Your Community

Introduction

Benefits of Starting a Local Support Group

Here’s How AXYS Helps Independent Local Support Groups

Benefits to Becoming a Local AXYS Chapter

How to Contact AXYS’s Chapter Relations Department

 

Introduction

The following sections describe Local Support Groups and Local AXYS Chapters.

The primary difference between these two forms of local support is the degree of affiliation between the local group and AXYS’s national organization.

“Local Support Groups” function independent of AXYS, and may offer a variety of support in the form of local or regional meetings and other services depending on local community needs and interests. Any Local Support Group may become listed on this site free of charge simply by submitting a completed registration questionaire and upon verifying the identity of a least one local contact. Local Support Groups are not affiliated with AXYS, and AXYS makes no representation concerning them other than that it will endeavor to update the listings shown on this site as and when new contact information is received from the local coordinator.

Some Local Support Groups may wish to take further steps to become established as a “Local AXYS Chapter,” which entails becoming formally affiliated with AXYS. In addition to receiving the same free services as Local Support Groups, Local Chapters have the option to receive on a cost-plus basis more significant levels of support from the national organization, the local group’s agreement to adhere to certain minimum standards of conduct and quality.

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Benefits of Starting a Local Support Group

Some of the reasons that you may want to consider forming a local support group include:

  • to create a network of people concerned about and working on the same issues.
  • to bring together the collective wisdom of people who have already experienced the same challenges you are seeking solutions for.
  • to create a group that can make a difference in your community, maybe even save a life.
  • to offer the patient’s perspective to legislators, the local medical community and educators.

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Here’s How AXYS Helps Independent Local Support Groups

Some of the ways that AXYS can assist your local group include:

  • Referrals free of charge to your group via AXYS’s toll-free number and this web site.
  • Quantities of AXYS’s newsletter, The Even Exchange, free of charge (larger quantities may entail a modest fee to cover our direct costs of printing).
  • Our information-packed publication for chapter and support group leaders.
  • Free copies of AXYS brochures and discounted prices on videotapes and other materials.
  • For approved events, we will mail your materials to AXYS members who live in your geographic area, thereby assisting you to get the word out about your events. AXYS will provide you with a preliminary estimate for the number of persons in our database who live in your area. Upon receipt of your printed materials, AXYS staff will print mailing labels and attach them to the outside of you materials, and take care of mailing them through the U.S. postal service or via email depending on the preferences expressed by our members.

The first step to beginning a Local Support Group in your community (or if you already have an existing group and care to list it on our website or request the above-described services) is to contact the Chapter Relations Department (see below), and express your interest.

Within two weeks of receiving your completed form, you will receive a letter including tips in setting up your group, copies of current AXYS educational materials as well as easy-to-follow guidelines concerning how to keep up to date and accurate the information AXYS provides concerning your group and events you are planning for persons in your community.

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Benefits to Becoming a Local AXYS Chapter

Whereas Local Support Groups function independent of AXYS, some groups find it useful to take the next step and become a Local AXYS Chapter. Although not required, this step permits AXYS to provide additional assistance to the local group leaders.

In addition to all of the ways AXYS is able to support independent Local Support Groups, here are some of the additional things that we’re able to do to assist a Local AXYS Chapter:

  • AXYS letterhead, envelopes and business cards identify you and your local group as being associated with a national organization, adding immediate credibility and helping to open doors to offices that might otherwise question your credibility to speak with authority on behalf of the population.
  • Your own email address with a genetic.org extension, and which automatically forward any messages that you receive directly to your personal email account but without disclosing that address to anyone until you elect to do so on a case by case basis.
  • Your own voice mailbox at AXYS’s toll-free number, where you can leave your own message for callers and that you can configure either to store messages until you dial in to receive them, or to automatically call you at a telephone number of your choice to let you know that you have a message waiting for you.
  • A 3-page template on our web site for you to describe your Local Chapter and the people who are associated with it, including an online collection feature for persons who are interested in donating money to your local group to make financial contributions to you.
  • AXYS will permit your contributors to earmark their donations for your Local Chapter, and we will pass any donations along to you net of bank service fees and direct costs (less than 6% in total), thereby assuring you at least 94% of such donations while saving you the time and hassle of needing to establish and maintain a 501(c)(3) tax-exempt status in order to provide your donors with a tax-exemption in connection with their cash and in-kind gifts.
  • Access (subject to signing a HIPAA compliant agreement that you will strictly maintain the confidentiality of all of the information) to AXYS’s confidential membership database in which to store contact information for all of the members of your local group, and including a number of helpful features such as the ability to send emails to everyone on your list or to generate mailing lists for letters and mailing labels.
  • AXYS will act as your Speakers’ Bureau, using our national resources and contacts to help you locate top clinicians and research scientists who are willing to participate as guest speakers for your meetings and in conducting grand rounds with local health care professionals to help familiarize them with the condition and best known practices.

The first step to beginning a Local AXYS Chapter in your community is to complete the Interest Indicator Form and submit it to AXYS.

Within two weeks of submitting your form, you will receive a AXYS Start-Up Kit. The kit includes guidelines and tips on starting your group, copies of current AXYS educational materials and instructions on next steps in formally affiliating your Regional Support Group as a Local AXYS Chapter.

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How to Contact AXYS’s Chapter Relations Department

It is through the voluntary efforts of people like you that persons living with one or more extra X and/or Y chromosome, their families, medical and education professionals find the support and understanding they need. Whether you elect to become a Local AXYS Chapter or prefer to remain an independent Regional Support Group, we at AXYS look forward to assisting with your efforts.

For additional information on starting a Regional Support Group and/or becoming a Local AXYS Chapter, contact AXYS’s Administrative Offices at the number listed below, or by sending an email message to the Chapter Relations Coordinator.

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