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Lupus/MCTD Awareness => Topic started by: Adminஐﻬ on September 22, 2007, 08:44:25 pm => Lupus/MCTD Awareness => Topic started by: Adminஐﻬ on September 22, 2007, 08:44:25 pm|
Title: How to Start a LupusMCTD Support Group Post by: Adminஐﻬ on September 22, 2007, 08:44:25 pm How to Start a LupusMCTD Support Group ~Starting Out Perhaps the time is right for you to begin your own support group for LupusMCTD patients. The following tips can help you get started: ~Network Begin by making a list of all the LupusMCTD patients you know. Include acquaintances and even the friends of your friends, family members, and coworkers. Once you've developed a list of people, begin contacting them individually to inquire about whether they would like to participate in the new support group you're starting. In addition, as you speak with individuals who are interested, ask them to spread the word about the new support group in their circles of friends, family members, and coworkers.(Remember, one doesn't have to have the disease itself, but would like to know more about LupusMCTD) ~Decide Where to Hold Meetings You might start out by meeting at a local coffee shop or at someone's house.(Your own home for example) Keep in mind, too, that your local public library may have meeting space available to you, and many large stores, restaurants, and malls have "community rooms" that you can use free of charge. However, make sure you call ahead of time to find out whether you can reserve the room for a particular date and time. Also, determine whether you will provide babysitting at the meetings, because that will affect where you decide to meet. If you do plan to offer babysitting, consider asking for space at a local church or synagogue. You might even be able to recruit a few adult volunteers to help out! ~Use the Flyer to Advertise Your Meetings. Post the flyer at the grocery store, in the library, and in your local coffee shops. You may even want to create bookmark-sized meeting announcements that you can leave in local bookstores and consignment shops. Also, if you have kids in school, don't hesitate to ask whether you can send home copies of the flyer. Due to the cost of reproducing large quantities of the flyer, you may decide not to do this on a regular basis. However, it can be a convenient way to advertise your first meeting to a large group of parents. *NOTE~I have our own LupusMCTD flyer made up I can send the flyer to you via email or postal mail. Or create your own with your scheduled date/time of meetings ~Use the News Media to Advertise Your Meetings. Call your local newspaper. Many times, they will not charge you to publicize a support group meeting through the community events page. You can also type up a simple press release to announce the formation of your support group and fax it to your local paper. This may encourage one of the local writers to do a short piece on your group, which could generate more members. In addition, contact any local radio stations and ask whether they'd consider scheduling a brief interview with you. ~Plan an Agenda for the Initial Meetings During the very early stages of your group, you may want to focus on providing opportunities for patients to share their experiences by talking about various topics in small discussion groups. For example, one week's topic might be communication with their Doctor. During the discussion time, members could share with one another what's working well for them in this particular area. This will naturally facilitate the sharing of new ideas, as well as help members get to know one another and possibly even go home with one or two ideas they can apply right away. ~Anticipating Growth It's true that there may not be many patients at your first meeting, but the group will grow with time. One way that you can make communication easier for the group is to generate a list of everyone's E-mail addresses. This way, you can send out quick reminders about meetings and activities. In addition, you'll eventually want to develop a core group of leaders who will share the responsibility for planning the meetings and publicizing the group. **Note~2 Years ago I thought at the most I would get 45-100 members. We are now pushing almost 500 members!! So growth does happen, if you offer what the public wants or needs. Most information to get is already posted here. Take advantage of the search engine to locate what you are looking for. Ask if you need help, I'll be glad to help you out! My future goal is to see at least one home in each state hosting their own LupusMCTD support Group in 2008. prplbtfy www.LupusMCTD.com Title: Re: How to Start a LupusMCTD Support Group Post by: Adminஐﻬ on November 16, 2008, 05:00:10 pm Support Network of The Lupus MCTD Foundation Across the World prplbtfy www.LupusMCTD.com prplbtfy The LupusMCTD foundation provides information and support for people who have (or might have) Lupus or a MCTD (Mixed Connective Tissue Disorder) illnesses. Lupus MCTD is becoming more and more common in the world. The diseases can be hard to diagnose and treat. Early symptoms can include rashes, fever, malaise, fatigue, headache, muscle and joint aches, and others. Later symptoms can include fatigue, muscle pain, joint pain with or without arthritis, numbness, tingling, burning, itching, vision problems (e.g., Sjorgens), sensitivity to light, short-term memory loss, sleep disturbance, and others. Your LupusMCTD state support group holds monthly meetings. If there is none in your area contact Kathy at LupusWebsite@aol.com for more information. We are still in need of state wide county chapter hostesses.
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