Narcolepsy Network Chat Transcript 10/28/2005 (Edited)

Welcome to Talk About Sleep, this is the Narcolepsy, Hypersomnia, and Fibromyalgia Chat, however we have a special treat for you tonight. Two distinguished board members from the Narcolepsy Network are here to answer questions about their organization and the upcoming conference.

Our first speaker is the President of the Narcolepsy Network. She has been diagnosed with Narcolepsy and Cataplexy since 1989 but experienced symptoms since she was very young. She is a charter member of the Narcolepsy Network. A former CPA, this incredible woman is raising a family, runs a local support group, leads a TAS chat, and has taken on extra responsibilities to keep the Narcolepsy Network running as needed. She is an incredible woman who is dedicated to helping individuals with Narcolepsy.

Our second speaker is the Treasure of the Narcolepsy Network. She has been diagnosed with Narcolepsy and Cataplexy since 1985. In addition to her Narcolepsy Network service, she has raised an incredible daughter and volunteered her time as a TAS chat host. However some of her greatest service has been her volunteer which lead to her eventual employment at Stanford University in their Center for Narcolepsy Research. This amazing woman serves as an incredible liaison for people with Narcolepsy and the medical profession.

1. What is the mission of the Narcolepsy Network?
2. Who is the Narcolepsy Network Comprised of?
3. Can something be done about the outrageous parking fees at the hotel?
4. What are some of the big projects that Narcolepsy Network has accomplished?
5. How does the Narcolepsy Network continuously support people with Narcolepsy?
6. Are the conference sessions mostly participatory in nature or lecture? And anything my spouse should know coming in to it?
7. How is the Narcolepsy Network funded?
8. What are the benefits of becoming a member of the Narcolepsy Network?
9. What are those big accomplishments that are yet to come?
10. About how many Narcolepsy Network members do you have signed up for conference?
11. What does it cost to become a member of the Narcolepsy Network?
12. How do I find out if there is a Narcolepsy Support Group in my area?
13. As a conference attendee, what kind of experiences and benefits can I expect by going to the conference?
14. How is the location of the conference chosen, and is there anything I can do to help it come to my area?
15. Do people from other countries attend and benefit from the Narcolepsy Network?
16. How is the conference specially designed to accommodate people with Narcolepsy?
17. I have idiopathic hypersomnia, would the Narcolepsy Network Conference be of benefit to me? What about a Narcolepsy Network Membership? What about if I have Chronic Fatigue Syndrome?
18. I heard something about an auction at the conference? How does that work?
19. Does the Narcolepsy Network sell apparel, mugs, and other materials with the Network Logo or something similar on it?
20. When is it appropriate to contact the Narcolepsy Network about personal advocacy issues?
21. Why is it important to encourage my doctor to become a Narcolepsy Network member?
22. Are there any info packets to return home with to give our doctors and info on why they should be members?
23. How can people with Narcolepsy help gain support for the Narcolepsy Network?
24. I would like to start a support group in my area. What does this involve and how much time a week? Who would I talk to?
25. Can we get a tape of the conference to show at a local meeting?
26. What is the web address?
27. Is the Narcolepsy Network associated with Talk About Sleep (TAS)?
28. Also, I am pondering a program for residents at the hospital and clinic I use. Do you have any ideas?
29. I don't have a lot of money, but I would like to become a member. Is there anyway that I can become a member?
30. Can you post the dates and place of the conference?

1. What is the mission of the Narcolepsy Network?
   Narcolepsy Network has a number of missions. First, we support and assist people with narcolepsy and idiopathic hypersomnia. We provide information to the public and also work to educate the public about narcolepsy. We also promote research and advocate for people with Narcolepsy.
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2. Who is the Narcolepsy Network Comprised of?
   The Narcolepsy Network is comprised of people with narcolepsy, the people who live with or care for people with narcolepsy, and professionals involved with narcolepsy in some way or another. It is a member organization, and when I say people with narcolepsy that also covers anyone diagnosed with related hypersomnias.
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3. Can something be done about the outrageous parking fees at the hotel? I do not remember the exact amount, but I think it's about $25 per day.
   That doesn't sound right. We can look into it. I understand parking is $12 per day. We may also be able to work out a discount or cover some of the parking fee.
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4. What are some of the big projects that Narcolepsy Network has accomplished?
   Narcolepsy Network was formed in 1986 by a small group of people with narcolepsy who wanted to offer support that the existing narcolepsy organization wasn't providing. From that modest goal, the founders wound up taking over when the former organization went under. The biggest accomplishment is the growth in members, from 75 or so in the third year to 1200 presently. We have been able to accumulate a tremendous amount of information and resources to help our members. The Annual Conference is also a big accomplishment. One year, founder Sue Carella and several members took an RV across the country, stopping in many cities to educate the public. We have also grown from an organization of strictly volunteers to a small staff. But we still see our biggest accomplishments ahead of us.
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5. How does the Narcolepsy Network continuously support people with Narcolepsy?
   There is a toll free number, and we answer e-mails. We have collected and keep current a large amount of informational materials, support group contact information, and a website. We also hold an an annual conference. A lot of what was said in the last answer also covers what it is and how it is that we help our members.
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6. Are the conference sessions mostly participatory in nature or lecture? And anything my spouse should know coming in to it?
   This year we are offering concurrent sessions. Some are participatory ... and some are lecture, lots of opportunity for mingling, and getting to know others. There will be sessions for family members as well as people with narcolepsy. If you don't have cataplexy, your husband will be seeing it for the first time. The first time you meet others with narcolepsy is a very emotional and rewarding experience.
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7. How is the Narcolepsy Network funded?
   Our funding comes from several sources - we are a membership organization - so members dues, grants or gifts from corporations and individuals. Our goal is to increase our membership so that we can sustain our basic office without grants, while we also plan to pursue more public grant opportunities.
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8. What are the benefits of becoming a member of the Narcolepsy Network?
   Our most obvious benefit is our newsletter. It's 16 pages long, and contains all sorts of articles - information on diagnosis and treatments, coping, research developments, support, even humorous stories and news. Other benefits include connecting people with local support groups, helping to form those groups Access to our educational materials Education, and advocacy People contact us with all sorts of questions Insurance, driving, employment and educational issues, information on medications ... you name it. We also monitor legislative actions, and will speak out in the interest of people with narcolepsy. A good example would be when a Public Citizen's group wrote to the FDA, calling for Cylert to come off the market We immediately wrote to say that for some people with narcolepsy, Cylert is the only excessive daytime sleepiness medication they can take.
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9. What are those big accomplishments that are yet to come?
   There is still a great need to educate the public. Only about half the number of people with narcolepsy are diagnosed. And with an estimated diagnosed population of 55,000, there are many people who don't know about us and could benefit from membership. AND we need to reach more professional who still have mis-information about Narcolepsy. The greater our membership, the more clout we will have and the more we can do for our members.
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10. About how many Narcolepsy Network members do you have signed up for conference?
    Last count was 178, but we are expecting at least 200.
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11. What does it cost to become a member of the Narcolepsy Network?
    Annual membership is $35. The newsletter makes up a large part of the dues.
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12. How do I find out if there is a Narcolepsy Support Group in my area?
    First you can check our website at www.narcolepsynetwork.org. If you don't find a group there, contact our office. We are always happy to help our members establish a support group as well. We can provide a list of people in a particular area, and we have a support group manual. We also have many members experienced with groups that can be consulted.
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13. As a conference attendee, what kind of experiences and benefits can I expect by going to the conference?
    Learn more about narcolepsy in general, treatments, coping strategies and most important meet other with narcolepsy. It's very empowering to meet others. You will also have opportunities to ask questions of leading doctors. You will likely make friends that you will stay in touch with for support and friendship, because we are the only ones who truly understand.
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14. How is the location of the conference chosen, and is there anything I can do to help it come to my area?
    We try to move to different locations through out the country. Expressing an interest in having it in your area will always help. We do try to make it as affordable as possible, and sometimes that plays a role in making the determination. We always try to have a local person to do some of the groundwork and help plan the conference. This year it is in Boston; Next year it is planned for Texas. Last year was Seattle. We've been in St. Louis, Long Beach, CA, Las Vegas, St. Petersburg, FL, New York ... and coming to a city near you.. eventually. We have a conference committee that includes members. Anyone can participate in helping if they like.
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15. Do people from other countries attend and benefit from the Narcolepsy Network?
    Occasionally we have had visitors from other countries.. Japan for example and Canada each year. I met two women from Holland one year, England, too. I think anyone attending feels the conference is beneficial. Few countries have the kind of support that Narcolepsy Network offers. We've received inquiries from people in South Africa, Nigeria, Chile, India. Narcolepsy is definitely international. There is a support group in the Netherlands, one is Switzerland and others I'm sure, but I don't know that any have an annual conference as we do. We have given permission in several cases for a group in another country to translate our Q&A brochure.
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16. How is the conference specially designed to accommodate people with Narcolepsy?
    At the conferences we have longer lunch periods so that people can take naps. There are frequent breaks so people can get up and move around to help them stay awake. We try to have healthy non sleepy food available, so that people won't have carbohydrate crashes. People staying at the hotel can go to their rooms for naps. Otherwise, areas are set aside for people to nap if they don't want to go to their room. And nobody has a problem with anyone falling asleep.
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17. I have idiopathic hypersomnia, would the Narcolepsy Network Conference be of benefit to me? What about a Narcolepsy Network Membership? What about if I have Chronic Fatigue Syndrome?
    I think all with excessive sleepiness will find something at a conference. The sleepiness of idiopathic hypersomnia is similar to narcolepsy and medications are the same; so much of our materials apply to both disorders. Chronic fatigue is a bit different, but as far as support, we are similar. Not everything will be perfect for everyone ... but disorders of excessive sleepiness can relate and empathize.
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18. I heard something about an auction at the conference? How does that work?
    It's a silent auction. People bid on items by marking a higher price than the last bidder. The highest bidder at the end of the day wins the auction. All sorts of items are contributed by members and businesses: from clothing to artwork, collectibles, cosmetics, and handmade items. Often time great deals can be had. It's fun.
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19. Does the Narcolepsy Network sell apparel, mugs, and other materials with the Network Logo or something similar on it? There have been lots of requests on the message boards for baby tees for adults and night shirts for adults.
    Good to know. We sold mugs last year which were a big hit. We have plans to expand the items we sell and offer them on the website. One item will be a print of a painting donated to the Narcolepsy Network, painted by a fellow person with narcolepsy. The painting will be on display at the conference.
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20. When is it appropriate to contact the Narcolepsy Network about personal advocacy issues?
    We have an advocacy policy in place. One can always feel free to come to the Narcolepsy Network with anything. If we can't directly help, we can often direct a person where to go. People have problems in so many areas. We can write a letter on a member's behalf or speak with someone to provide credible information on narcolepsy. What we can't do is talk about a member's specific symptoms, because we are not privy to their medical records. Advocacy issues come up in getting accommodations in school and at work, also in getting medications covered under insurance. One lady needed help convincing her city that she needed special transportation and could not take the public bus, so we wrote a letter for her.
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21. Why is it important to encourage my doctor to become a Narcolepsy Network member?
    We feel that we have a lot of good information to offer to the professional so that they can better treat their Narcolepsy patients. Many sleep doctors have so few patients with Narcolepsy that they don't get the chance to get real "practiced" at treating their patients with Narcolepsy and Idiopathic Hypersomnia. Many of the best practices or newer treatments are not published. This is the sort of information that we are sure to include in our newsletter. It helps them be better doctors.
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22. Are there any info packets to return home with to give our doctors and info on why they should be members? I was hoping to return with lots of info for my doctor from the conference.
    Many sleep doctors have backgrounds in pulmonology. Since narcolepsy is a neurological disorder, membership helps them pick up information that helps them with narcolepsy patients. There is a specific brochure geared towards professional that encourages membership.
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23. How can people with Narcolepsy help gain support for the Narcolepsy Network?
    Spread the word. Encourage your friends and family to join. They will not only learn about Narcolepsy it will be a fantastic way to support the person with Narcolepsy in their life. There are many people who confuse Narcolepsy Network with other organizations. We are not the N-List and we are not the National Sleep Foundation. These are separate groups. Narcolepsy Network is the only group that has a real-world presence. And it's about more than just the member ... joining supports the cause as well as the member personally. Individual members can also plan fund raisers. Some members will have connections that can lead to grants or donations. Others can volunteer.
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24. I would like to start a support group in my area. What does this involve and how much time a week? Who would I talk to?
    Each group probably has a personality of it's own. More people means more work, but once the group gets going, the work can be spread out. My group in San Francisco just meets quarterly now, after having met monthly. To start a group, contact the Narcolepsy Network office. We can provide you with a list of people in your area. We also have a support group manual with many tips and ideas.
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25. Can we get a tape of the conference to show at a local meeting?
    We have taped sessions at all of our recent conferences. We are working on getting a volunteer for this year. The cost of taping is prohibitive otherwise. Some of the individual discussions or lectures will be taped and can be bought. The conference in its entirely is not available. The CDs we offer are a great bargain. They are listed on our website under Educational materials. You may share them with your support group.
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26. What is the web address?
    www.narcolepsynetwork.org
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27. Is the Narcolepsy Network associated with Talk About Sleep (TAS)?
    We are not related organizations ... but we have a long history of working together. Talk About Sleep has always been very supportive of the Narcolepsy Network and attends the conferences. Many Talk About Sleep people learn about Narcolepsy Network through other people on Talk About Sleep, and the reverse is true as well. Talk About Sleep chats and message boards have been a great service to people with narcolepsy.
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28. Also, I am pondering a program for residents at the hospital and clinic I use. Do you have any ideas? This program would be to educate medical residents on the symptoms of Narcolepsy, particularly cataplexy, while we are in hospital for other things?
    This is something that we don't have right now, but we can create a package of information for that purpose. It would include information on symptoms, paradoxical info on medications, reaction to anesthesia, etc. This falls under our advocacy policy, which is tailored to the needs of the individual. Once done, it's there for anyone else who needs it.
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29. I don't have a lot of money, but I would like to become a member. Is there anyway that I can become a member?
    We don't turn anyone away. Membership upon request can be provided at no cost or at a reduced price.
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30. Can you post the dates and place of the conference?
    The conference is Nov 11-13 at the Boston Embassy Suites. We hope to see everyone at a conference ... if not this year ... sometime in the future. Full details are posted to the National Conference page of our website. www.narcolepsynetwork.org
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I'd like to specially thank our two guest speakers this evening for taking the time to answer our questions about their wonderful organization. It was a pleasure to have you, please feel free to come back any time. I'd also like to thank our guests for attending the chat and for their excellent questions.