Dear Potential A.W.A.K.E. Coordinator:
Thank you for your interest in the A.W.A.K.E. Network. The following information is designed for potential coordinators who want to begin the process of starting a new group in their community. One very important part of a successful mutual-help group is self-evaluation and planning prior to the formation of the group. As you begin this process, this material will offer you the benefit of the experiences of current groups so that your new group can be as successful as possible. Getting involved in A.W.A.K.E. as a coordinator will require a commitment of some time and effort, but you will find it a very rewarding experience.
If you decide that you would like to start a new A.W.A.K.E. group, please complete the order form for the A.W.A.K.E. guidelines and send it to ASAA with payment. The $30.00 fee for the guidelines covers the cost of production, shipping, and handling. Every group is required to purchase this comprehensive resource book which provides a step-by-step and how-to approach to successful planning including organizing tips, descriptions of activities of existing groups, a three-page list of meeting topics, relevant articles about mutual-help groups and teamwork, an explanation of fundraising and legal issues, and lists of other resources available to all ASAA A.W.A.K.E. Network coordinators. All active A.W.A.K.E. groups receive periodic updates to the guidelines and benefit from ongoing communication with the ASAA.
Once you've had a chance to review these materials, please contact us with any questions or concerns. Thank you again for your interest in volunteering your time and skills with the A.W.A.K.E Network. We depend on the dedication of volunteers like you to continue working toward our goal of reaching everyone in the United States affected by sleep apnea.
Sincerely,
American Sleep Apnea Association
What is the A.W.A.K.E. Network?
A.W.A.K.E., an acronym for Alert, Well, And Keeping Energetic," is a network of hundreds of mutual-help support groups throughout the United States for persons affected by sleep apnea. The Network, founded in 1988, is an integral part of the American Sleep Apnea Association (ASAA) and since 1990, the two have been partners in assisting people with apnea, their families, and the healthcare community concerned with sleep apnea. ASAA was founded in 1990 as a nonprofit 501(c)(3) organization with the mission to reduce injury, disability, and death from sleep apnea and to enhance the well-being of those affected by this common disorder. ASAA works to increase understanding of sleep apnea and serves as an advocate for people with the disorder. The ASAA A.W.A.K.E. Network plays a crucial role in both those efforts. A.W.A.K.E.'s philosophy is to give people affected by sleep apnea--people with apnea, their family members, and friends--support and information about the disorder.
ASAA A.W.A.K.E. Network members are armed with knowledge of sleep apnea and methods of treatment and thus have a better understanding of the nature of their disorder and their prescribed treatment. As a result, they are more likely to take appropriate steps in managing their own health care. In addition, through interaction with others who share their diagnosis, individuals with sleep apnea (and their families and friends) can provide peer support and suggest coping mechanisms to one another so the sense of isolation common with sleep apnea is alleviated. Moreover, Network members are also apprised of the latest developments in the sleep field. As informed individuals, A.W.A.K.E. members can play an important role in educating the public about this common disorder.
Health care professionals also benefit from the educational programs and the additional opportunities for patient follow-up the groups provide. This encourages better communication among patients, the sleep centers' staff, dentists, and home health care companies. At the same time, the ASAA A.W.A.K.E. Network is committed to the philosopy of patient-centered mutual-help groups. It is the people with sleep apnea themselves, often with the guidance of some sleep professionals, who make the decisions about the group, its structure, and functions. Local A.W.A.K.E. groups tailor their group's activities to meet the needs of the members. A.W.A.K.E. meetings are held regularly, and guest speakers are often invited to address the group. Topics may include advice on complying with continuous positive airway pressure (CPAP) therapy, legal issues affecting individuals with sleep apnea, weight loss, treatment options such as oral appliances and surgery, and new research findings.
Each group determines how often it wants to meet--monthly, bi-monthly, or quarterly. Neutral sites that can be obtained free of charge such as schools, public libraries, shopping malls, community centers, or religious institutions are ideal meeting locations. We provide three pages of suggested meeting topics as part of the guidelines, and the list of topics continues to grow with suggestions from ASAA members, staff, and A.W.A.K.E. coordinators. In every issue of WAKE-UP CALL, different A.W.A.K.E. groups are highlighted in the A.W.A.K.E. column to allow other coordinators to benefit from the different ideas.
ASAA has available a variety of resources such as reports on specific topics related to sleep apnea, brochures, videos, and newsletters. All of our materials and programs are developed in direct response to the public's needs, and the publication list is naturally updated periodically.
The ASAA A.W.A.K.E. Network Director and other ASAA staff members are always available to A.W.A.K.E. groups that may need to solve problems, to share frustrations, to discuss progress, to review meeting announcements and other materials, and to implement new ideas. Board members and other coordinators often answer questions from A.W.A.K.E. groups and, after listening to the issues and suggestions, will work to develop programs in response to needs expressed.
As the number of people diagnosed with sleep apnea continues to grow, the need for A.W.A.K.E. has not diminished. Rather, it remains an essential part of the ASAA's efforts to serve as an advocate for people with sleep apnea.
Questions to Ask Yourself Before Proceeding
Is There A Need in My Community?
Search our database or contact the ASAA for a list of A.W.A.K.E. groups already active in your area. Speak with the coordinators of these groups to determine if they are meeting the needs in your community. Are they struggling to find members or are they meeting frequently with good attendance? How can you help them meet the needs of people affected by sleep apnea in your area?
In general, it is best to combine forces with an existing group and to use your energy and resources to help that A.W.A.K.E. group meet the needs of its members, rather than forming another group which will further fragment A.W.A.K.E. in the community. However, in many larger communities there is often room for more than one group depending on the population, geography, meeting times, and the activity level of the groups already in existence.
If A.W.A.K.E. is not active in your community or if you have determined that there is a need for another group in an area where A.W.A.K.E. is already active, you must then consider whether your community will support a group. As a potential coordinator, you have most likely seen an unmet need in your community with many people who have questions and concerns about living with this common disorder.
Will My Community Support A Group?
Identify coordinator/s
For A.W.A.K.E. groups started by a sleep professional, one or more coordinators who will take leadership responsibilities should be identified. People affected by sleep apnea, often patients seen by the sleep professional, are the appropriate choice for this role. The philosopy of mutual-help groups is that they are run by and for the people affected by sleep apnea, with the professional in an ancillary role. Once some group leaders have been identified, the group must agree on the necessity of sharing the workload. By structuring the group in this way from the beginning, there will be more active volunteers in the future because "ownership" of the group and the responsibility for its success is shared by all the members.
Identify potential members
If you are starting a new A.W.A.K.E. group, you can generate interest for your group among sleep centers and in your community by working to find people who share your interest in starting, not simply joining, a mutual-help group. Print a flyer that specifically seeks others interested in helping to start an A.W.A.K.E. group, and distribute it to your sponsors to be shared with their patients. There are many ways to publicize your new group, and this topic is discussed in more detail in the A.W.A.K.E. guidelines.
Identify possible sponsors
If you are a person affected by sleep apnea and a potential coordinator, your group is not required to be sponsored by sleep professionals or organizations, but we do strongly recommend that each group find at least one sponsor, and preferably more than one, to assist you in your efforts.
Contact the sleep disorders centers, doctors and dentists working with sleep apnea, home health care companies, and any other appropriate sleep professionals in your area. Explain that you are considering starting an A.W.A.K.E. group and invite them to participate as sponsors. Sponsors can be very helpful in arranging speakers, distributing meeting announcements, and providing refreshments. Your sponsor/s will also serve as a resource and advisor for your group.
What Else Do I Need to Know?
Think about who will be the contact person for the group
For most groups this will be the coordinator but may be an individual at the sponsoring sleep lab or home care company. Some groups have been successful in using a dedicated voice mail phone line for people seeking information. The contact person should be willing to receive calls from the ASAA and interested individuals in your community as the telephone number and address will be given to potential members and other A.W.A.K.E. coordinators. It would be helpful if each group has e-mail access to participate in a future e-mail list for A.W.A.K.E. coordinators, but this is not required.
Think about a name for your group, based on the geographical area it will serve
Plan to discuss this during your first organizational meeting. Keep in mind that the name you choose for your group is very important in the impression people have of your group and how welcome they feel. Some good examples are "Elk Grove Village A.W.A.K.E." or "A.W.A.K.E. in Western Pennsylvania."
Understand the legal issues
Because ASAA is a nonprofit 501 (c)(3) organization, all A.W.A.K.E. groups are bound to follow certain restrictions. One of the most important is that the groups cannot endorse or recommend (or imply endorsement or recommendation of) any company, product, or health care provider. This is one reason we use generic terms, not trade names and require that A.W.A.K.E. groups do the same. In addition, A.W.A.K.E. groups are not just about CPAP, but about sleep apnea overall. Most important, the ASAA A.W.A.K.E. Network is not to be used to marketing purposes. A.W.A.K.E. groups must be open to everyone, regardless of where they were diagnosed or treated.
An entire section of the guidelines is devoted to these issues, and coordinators are always encouraged to call the ASAA office whenever they have a question about legal issues. Coordinators have certain obligations to uphold, but if they have questions the ASAA is always available and has legal counsel to help manage potential problems.
In order to participate in the A.W.A.K.E. Network and before using the A.W.A.K.E. name, coordinators must sign and return to the ASAA the "Statement of Understanding" which is included with the guidelines. This ensures that all coordinators understand their responsibilities and support the goals and missions of the ASAA and the ASAA A.W.A.K.E. Network.
I'm Ready to Get My A.W.A.K.E. Group Started!
Complete the order form for A.W.A.K.E. guidelines and return it along with your check or money order to the ASAA A.W.A.K.E. Network Director.
The organizational guidelines facilitate the planning and organization of your group. Any other expenses involved in maintaining an A.W.A.K.E. group are minimal.
We encourage A.W.A.K.E. coordinators to acknowledge the support of all current Industry Roundtable members at each meeting, as well as local companies that may have provided assistance (such as sponsoring the mailing or the refreshments) for that particular meeting.
Membership in the ASAA is not required but is strongly recommended. Your financial support of the ASAA makes it possible for us to support the A.W.A.K.E. Network in the important mission of helping those with sleep apnea. Your membership also strengthens our efforts to serve as an advocate for people with sleep apnea and we would like to share some of the thoughts from people affected by sleep apnea who have been helped by our efforts. To quote from some: "Thanks for the job ASAA is doing by providing us with information and keeping us up to date on sleep apnea....," "Glad to know you exist....," "Keep up the good work. It is nice to know there are other people in the world suffering with the same problems ...." and "Your help has been invaluable." Together we can achieve the ASAA's goal that all people with sleep apnea are diagnosed and treated properly.
