Michelle Hemingway from Sturbridge, MA, passed out 7-inch squares of muslin at our conference in Las Vegas last October. The objective was to make a 2003 dream quilt commemorating the fiftieth anniversary of the discovery of REM sleep. Over the weekend of February 28th to March 2nd that quilt was put together at my home in Pittsburgh. Present were ten people representing seven different support groups from around the country. They were: Michelle Hemingway, MA, Colleen Rettig, OH, Tammy and Kathy Collins, PA, Laura Everett, OH, Pam Sadourian, FL, Betty Scott, FL, Ann Austin, MO, Grace McGuire, Washington, DC and myself. Together we selected and pieced together contributions from members in 20 different states. Ann Austin helped Michelle with organizing the project.

The weekend was a three-day support group meeting. People shared their sewing skills and the party atmosphere along with their frustrations, medication experiences, lives, joys, coping skills and the importance of the Network and their support group to them.

Betty Scott, FL, Barbarar, PA, A, Colleen Rettig, OH, and Michelle Hibbard Hemingway, MA, look over the quilt squares.

The quilt will be exhibited in Washington, D.C. for National Sleep Week, beginning March 30th. In addition it will be exhibited at our National Conference in Atlanta in October and will be used on the web site and in other ways to symbolize the shared experience of those of us meeting the challenge of narcolepsy.

Organizations like ours, typically, have a national organization responsible for education, communication, governmental relations and research. The national organization provides a stronger voice to doctors, drug companies, politicians, governmental agencies and the media. It is the first place that somebody goes when they are diagnosed.

The support groups provide the face-to-face personal interaction to share each person's experience and help the members realize that they are not alone. While each individual is unique, their experience is common in a variety of ways. Our individual group helps us to keep in touch with the viewpoint of a person with narcolepsy.

Founder and Past President, Niss Ryan developed an excellent support group organization manual years ago that is a classic. If you do not have a group in your area, call the National Office to request a copy and start your own group. There are an estimated 100,000 people, or more, who are undiagnosed, walking around feeling sleepy and confused while being told they are lazy. By personalizing the disorder in our communities we can encourage others to seek diagnosis and treatment. Once someone contacts the National Office they are referred to the local support group for ongoing comfort and encouragement as desired.

The National Conference brings together support group participants, researchers, clinicians, newly diagnosed individuals, company representatives and others to gain a nationwide voice and perspective. In addition, the resources of the national organization help in a variety of ways to keep that local touch functioning. The "Dream Quilt" is a collection of pieces of fabric visually representing those shared lives of people with narcolepsy around the country.

You can participate in strengthening that national voice and perspective by renewing your membership and making a further contribution as well. Your dollars, like the quilt, will piece together all of our lives for our own benefit, the understanding of our various communities and the needs of those who have not net been diagnosed. Thanks for joining with us for your own benefit and that of others trying to understand narcolepsy.

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