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: Activist's Corner
ICA Support Group Transition PlanDear Former ICA SGL's, SC's, & TSVs (April 12, 2001) If you're like most former ICA support group leaders, you were probably shocked and angered by the recent letter from Carol Davis announcing that they are discontinuing their current volunteer support programs. This is a very sad development in the U.S. IC community but there is hope at the end of the tunnel. There have been (and currently are) IC support groups around the country that exist independently from the ICA. IC-Redwood Empire in Northern California is one of those independent groups. Though our group left the ICA in 1996, we continue to offer hope, information and support to our community. As one IC support group leader to another, I'd like to extend you all a helping hand in this difficult time -- and to let you know that there are resources out there available to allow your group to continue its important community work independently, in the absence of ICA funding and assistance. To put it simply, you don't need the ICA or the ICN to have a great IC support group. As an independent group, you will have the chance to do the programs, newsletters and fundraising that you've probably wanted to do for some time. Yes, it will take time and thought as you consider your options. But, as the ICA falters, your group and work can be a light of courage, hope and inspiration to those who need it the most, the IC patient. Don't give up just yet! The following is a list of Q&A which might be helpful to you as you consider your options. (1) Can
a support group exist independently from the ICA?
But, for local support groups with modest budgets, led by volunteers and that make no profits, it may not be necessary. The California Non-Profit Corporation Handbook, prepared by Nolo Press, offers the following example:
We kept IC-Redwood Empire small, informal and operated it as an informal association. We had no paid staff. We volunteered our time. We made no surplus. We simply placed a jar on the table at meetings to collect funds for our newsletter. In fact, we never directly asked for funds from our members. Our meetings were free to all and those who could donate some, whether it be $2 or $20, placed it in the jar. We received MORE money this way than we ever did from the ICA and it was enough to keep our group going. For those of you in other states: Take some time to research the laws in your state. It could be as simple as a phone call to your local city or county Volunteer Center (listed in the phone book) . Across the US, they offer local non profit groups a wide variety of free resources, from training & classes, to networking with other support groups. Ask them about the laws in your state. With luck, you may have a law like ours allowing to you be informally organized. In other cases, though, you may want to become a small 501(c)3. The filing fees are usually modest if you anticipate gross receipts to be less than $10,000 (i.e. around $200 or so).
#1. Have your meetings at a local hospital, library or restaurant rather than your house. This will reduce the possibilities of any accidents happening at your house. #2. Always follow the golden rule. You may NOT give personal medical advice. Begin your meeting with a standard disclaimer and always remember that your job is to encourage the patient to talk about their concerns with their own physician. You cannot and should not give medical advice. Also include your disclaimer on any newsletters that you produce. To date, we know of no cases where a support group leader has incurred personal liability for groups. But, by following the rules above, you've created a good foundation. Of course, if you have any concerns, talk with your local Volunteer Center or a legal professional. They can help you learn more about this.
Focus your new group on more than just support, but in being involved educating your community about IC. As a support group leader, my goal was to bring the nations best resources to my county and to train our local physicians. So, the first event that we did was contact our local teaching hospital and ask them to put interstitial cystitis into their resident grand rounds program for the year. They loved the idea! We called a national IC speaker who not only said "yes" but was on the speakers bureau for a pharmaceutical company who covered all of his expenses. The additional expenses were then covered by the medical association. The next day, our speaker met with over 200 patients in a morning session! So, think big! Be bold! Give your group members activities to do. Involve them in delivering new information and materials to their physicians. Do letter writing campaigns. Work with other non-profits & support groups in your town. Plan events. Ask your local newspaper to do a story on IC. Get your meetings listed in your newsletter calendar of events. The best support groups aren't just pity parties and people sitting around telling how miserable they are. They mobilize group members to take action and get involved.
B. Schedule one final meeting to discuss this change and ask your members to bring their thoughts and opinions on whether you should continue your local group. C. Before the meeting, contact your Volunteer Center to see what resources they have available and learn about the structures for groups available in your state. D. Walk into the meeting with your heart on your shoulder. You can't do it all.. and it's time to survey your members about what you should do. If no one will step forward and help, then it's probably time to end it. Say thank you to everyone and encourage them to participate in long distance support, either through the ICA or the ICN. Remember that you can't do it all by yourself. E. If you get some volunteers, then it's time to strike out on your own. Create a small committee, stay late and discuss your options! Go for it!
Now, it's hard to imagine what to do with $150, $200, $500 or even $1000.00. Don't fritter it away! Encourage your members to continue to bring goodies and water to meetings. Phone bills are always a challenge. Ask your members to call you, especially if it is long distance. Try to use email when possible! Email also works great for meeting announcements too. Use that extra money for something new that you've never done before, like writing letters to your local doctors introducing your group and about new IC resources in the area. Consider doing a bake sale or garage sale for your group. You couldn't do that under the ICA and keep the money for your group but you can do that now as an independent group. Just one sale could generate all the money you need for a years worth of newsletters. Just remember that the donations are NOT tax deductible. Remember that pharmaceutical sales reps can also help. You can call Alza and ask for the name of your local sales rep. When you talk with that rep, explain that your group was disbanded by the ICA but that you would like to continue it. Ask them if they'll fund your first mailing to the doctors in your area. They just might be able to help you. You don't have to, nor should you, give them member info like names and addresses. In a fair exchange, you can invite them to come and take questions at your group. Some sales reps really help groups buy providing books, chair cushions or videos too! It's worth considering.
As far as we're concerned, it's not about the ICA or the ICN. It's about sharing important support opportunities to patients in need. If you have a local group, we're happy to spread your news. If you decide not to continue your group, we do have weekly support group meetings and guest lectures on our web site, all for free. If someone doesn't have access to the web, the ICA's phone friends program is certainly a viable alternative.
You can get a free booklet on IC that's quite good from the NIDDK that is great for newbies. The NIDDK also has a lot of non-copyrighted materials that you can print off the web and use. Just visit http://www.niddk.nih.gov for more info! You can also do searches for new IC articles at the National Library of Medicine's web site, PubMed. This will give you an updated listing of IC journal and research articles that you can print out and distribute to your group. Once you get the abstracts, you can also visit your local medical library to get full copies of articles. (http://www.ncbi.nlm.nih.gov/PubMed/) You are also certainly welcome to use any of the articles and resources on our web site (http://www.ic-network.com) for your group. We have monthly articles on diet, self care, new research breakthroughs and much more. We also have a free monthly newsletter that you and your members are welcome to sign up for. The only restriction that we have is that our materials maintain their copyright and not be resold for a profit, though you are welcome to ask for help with copying fees. We know that many of you have done this and we're really glad that you've found our information useful. The pharmaceutical companies (especially Alza) have lots of preprinted materials available, including informational brochures, voiding diaries, samples and much more.
Some important questions
to ask are: The National Charities Information Bureau (http://www.give.org) has a wonderful web site that will help you understand how non-profit organizations should operate and what you have the right to know about an organization that you would like to donate to.
Our group started small but then grew very quickly. After the first year, we had more than 200 people on our mailing list. Now, if you have been an ICA support group leader for some time, then you know how difficult it was to get adequate funding, especially in the mid 1990's. For me, it seemed as if the national office didn't really care about funding our group. When I asked to do a newsletter to reach out to those patients who were homebound, I was told "No." We did the newsletter anyway and paid for it out of our own pockets... just like many of you have done. When I offered to build the ICA the first web site on IC, I was told that the internet would never work. (Out of frustration and my belief that this could work, I built the Interstitial Cystitis Network web site, specifically as a FREE resource of IC information). Our group eventually made the decision to become independent. We haven't regretted that decision.
If I can help you in any other way, please ask! I know that some of you have been told misleading things about my work and our web site... including that it is "for profit." I'm a patient just like you who finally decided to make the break from the ICA. I'm proud of the work of my IC friends and ICN volunteers who work, daily, to make our web site and publishing company really useful to IC patients and support groups world wide. Please remember that our site is completely free to all. We won't ask you or any of our users for money to use our services, including the opportunity to attend guest lectures online from many of the leading US researchers and physicians. Our site is supported by a few select advertisers and the purchase of books, chair cushions, heating pads, optional subscriptions and other materials from our site. I welcome you to the independent IC group community. If my group could do it, I bet yours has a good chance too! Think about it. Consider it. If it feels right, go for it! Best wishes to you,
Founder, Interstitial
Cystitis Network 5636 Del Monte Court
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