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What is Narcolepsy

The Narcolepsy Support Group NZ is a nationwide group of people with a connection to narcolepsy. We aim to support members, families, and friends, by providing a forum where we can exchange both self-help techniques and news of developments in research and treatment. We seek to educate both the general public and health care professionals of the symptoms of and treatment options for narcolepsy.

We offer the opportunity to meet and share experiences, and provide one to one support for those newly diagnosed. An annual meeting is held each year. Rise & Shine, our newsletter, comes out three times a year, in February, June and October. As of now we have over 40 financial members. Membership is open to anyone, and by paying a subscription $20.00 a year you can receive our newsletter. The financial year is May 1st to April 31st.

In recent years we have added a few members and our attendance at the Auckland Sleep Health Conference in October 2003 has paid off with a research project on narcolepsy underway (for the first time?) here in New Zealand. This is a pilot study being done by Massey University. If you would like to participate in this study by filling out a 20–30 minute questionnaire, please contact us.

Our first meeting was held on 16 February, 1991 in Auckland. Sixteen people attended. We had a list of twenty-nine names of people interested in the formation of a support group, with addresses ranging from Whangarei in the north to Dunedin in the south.

By 1994 the membership list had grown to twenty-six, and two meetings a year were being held at Auckland.

Because fewer people were making the trip to the central city, in April 1996 we changed the meeting venue to then-president Doreen Terry's home in Drury, South Auckland.

We have attempted to hold meetings at different places around the country, but most of our active members are from the central North Island with the result that recent venues have included Mangatarata, Cambridge and Tauranga. The 10th anniversary meeting was scheduled for Wellington, but it had to be cancelled due to lack of interest. We hope to address the issues of travel time and cost by eventually establishing regional branches.

In general we will continue to provide support and information by producing the newsletter, educational printed material and website content. One main objective is to increase our membership by reaching out to people newly diagnosed with narcolepsy through the sleep centres and specialists.

Other long-term goals include:

  • Providing informational lectures for GPs and other health care professionals
  • Creating an awareness program for university health services in New Zealand
  • Working with other sleep-related support groups to get out the message about sleep-related disorders and their potential dangers.