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    Dear Former ICA SGL's, SC's, & TSVs

    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?
    (2) What was the hardest part about not being part of the ICA?
    (3) Was it legal? Can you do it and not be a 501(c)3?
    (4) What's the advantage of an informal structure?
    (5) What's the disadvantage of an informal structure?
    (6) What are the legalities and liabilities?
    (7) Is it worth your time?
    (8) What can you do next?
    (9) Are there alternate sources of funding?
    (10) Can you expect recognition or referrals from the ICA for new patients
    in your area.
    (11) What non-ICA materials are available?
    (12) What does the ICN get out of it?
    (13) What's up with the ICA finances?
    (14) How IC-Redwood Empire became an independent IC group

    (1) Can a support group exist independently from the ICA?
    Yes, ours and several others have. We're usually affiliated with a hospital
    or physician. We serve the patients in our community. Our money stays in our

    (2) What was the hardest part about not being part of the ICA?
    We were the most worried about not getting patient names as provided by the
    ICA. But, it turned out that that wasn't a problem. After our group members
    voted to leave the ICA and become independent, we made simple flyers and
    delivered them to every urologist in our county (about 20), as well as many
    gynecologists. We made it a point to talk with the nurses and ask how we
    could help them. From that moment (and in the five years since), nearly
    every patient diagnosed in our city was referred to our group. The key was
    offering to help. Rather than being burdens, our group members were seen as
    assets to those clinics. We share our new resources with those nurses and
    have made some very productive long term relationships.

    (3) Was it legal? Can you do it and not be a 501(c)3?
    As many of you know, becoming a 501(c)3 is a difficult and time consuming
    process, requiring an official filing with the state as a corporation AND
    detailed annual financial reporting. It requires a corporate Board of
    Directors who are willing to meet regularly, create policies for the
    organization and a staff to implement them. In fact, we really need to take
    a moment and commend the original founders of the ICA for doing that. That
    was a big step for the IC movement in the USA.

    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:

    >"Many groups do fine and accomplish their nonprofit purposes as
    unincorporated nonprofit associations, without formal organizational
    paperwork and written operational rules. If you can accomplish your
    nonprofit purposes and goals informally, you may be happier staying small.

    Example: A senior citizen's botany club is organized informally. Initially,
    six members take a monthly nature walk to study and photograph regional
    flora. Everyone chips in to buy gas for whoever drives to the hikes starting
    point. Recently, membership has increased to fifteen and the group has
    decided to collect dues from members to pay for increased expenses - gas
    money, guidebooks, printing club T-shirts - associated with more frequent
    field trips. To avoid commingling club monies with personal funds, a
    treasurer is designated to open a bank account on behalf of the
    organization. Several suggest that it is time to incorporate the club. Does
    this make sense? Probably not. There is no new pressing need to adopt a
    corporate form or to obtain formal recognition as a tax exempt non-profit.

    If your group does not generate a surplus (does not make a taxable profit),
    does not need to attract tax deductible contributions, does not need to
    apply for public or private grant monies, and has no legal need to adopt the
    corporate form, it may decide it's best, at least for the present, not to
    form a nonprofit." <

    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).

    (4) What's the advantage of an informal structure?
    It's easy to do, keeps a small group going and could, over a period of time,
    create enough interest to create a larger organization.

    (5) What's the disadvantage of an informal structure?
    Donations are not tax deductible. It's important not to mingle personal and
    group funds. Many banks offer free bank accounts for small clubs or groups,
    or with modest fees.

    (6) What are the legalities and liabilities?
    Recall the training that you've received.

    #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.

    (7) Is it worth your time?
    Was it worth your time to be an ICA support group leader? Of course it was.
    There are patients who need you. Yes, you didn't expect to be cut loose and
    for your members to be abandoned by the ICA. But, this is a chance to do
    something new and different.

    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

    (8) What can you do next?
    A. Send a copy of the letter that you received to your group members so that
    they know that you've been dropped from the ICA. Ask your members if they
    would be interested in receiving information on a new IC group in your area.
    This way, you'll be letting them know about what has happened AND you'll be
    creating a phone and address list that YOU own.

    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

    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

    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!

    (9) Are there alternate sources of funding?
    The great thing about being independent is that your members will donate to
    your group first and this is as it should be. Anyone involved in fundraising
    knows that local programming attracts the most donors. This is one obstacle
    that many national groups face. Donors love to see their money benefiting
    patients in their town, county and state. It may easier than you ever
    expected to get donations.

    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.

    (10) Can you expect recognition or referrals from the ICA for new patients
    in your area.
    Historically, the ICA has denied the presence of independent support groups.
    So, be prepared for no referrals or recognition from them at all. But,
    we're very happy to help you promote your group. You can list your group on
    our web site at any time. Did you know that we have message boards for each
    state in the USA? Feel free to announce meetings and promote your group in
    those boards. You're welcome to ask ICN users in your state to attend your
    group. (

    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.

    (11) What non-ICA materials are available?
    There are many free sources of IC information on the web that you can use
    with your group.

    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
    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.

    You are also certainly welcome to use any of the articles and resources on
    our web site ( 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.

    (12) What does the ICN get out of it?
    Pride in the sheer power of IC patients to do wonderful things and to care
    for the IC patients around them. When the ICA stopped helping us, we proved
    that it is possible to do it without them. You can do it too... and we'd
    love to inspire you to be active and go for it. The more IC activists the

    (13) What's up with the ICA finances?
    I encourage you to ask some tough questions of the ICA in light of their
    decision to cease your support group activities. I don't think that anyone
    who has donated to the ICA in the past should patently accept a simple
    explanation of "due to financial reasons." This is a serious setback to the
    IC movement in the US. It is appropriate for you and your group members to
    ask the appropriate "who, what, where, why & how" questions to better
    understand what has brought the ICA to its financial knees before you commit
    further donor dollars.

    Some important questions to ask are:
    1. Who is on the corporate board of directors? Do they have the necessary
    financial skills and fund development training to guide this organization?
    Are they recruiting new board members with better skills and fresh ideas?
    2. What specifically led to the loss of funds? Who on staff was responsible
    for monitoring the budget?
    3. What other changes were made to reduce the budget? A reduction of
    salaries?? Staff at part time salaries?? Smaller offices??
    4. Why weren't donors and members informed of this months ago?
    5. What plans do they have in the future to prevent this from happening
    6. How can donors participate in future financial reviews of the
    organization? Why aren't there traditional "annual meetings" where members
    are given the chance to review and discuss the finances of the organization?
    7. Demand that their annual report & IRS Form 990 be published on their web
    site so that you can monitor the financial health of this organization.

    The National Charities Information Bureau ( 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.

    (14) How IC Redwood Empire became independent of the ICA?
    I began my involvement back in 1993 when I became an ICA support group
    leader. I was newly diagnosed, had just lost my job and was scared out of my
    mind about IC. But one thing I did know is that I couldn't sit back and not
    try to be a part of the IC movement. The ICA needed group leaders and I
    served as an ICA group leader for two years.

    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.


    Now that all official ICA groups are disbanded, we wanted to encourage you
    to do it on your own. Just imagine the good that can happen if all groups
    finally collaborated together without worrying about politics. We could
    share successful meeting ideas and topics. We could jointly work on media
    campaigns. We could support each other as support group leaders and
    volunteers. We could ask each other for help if we have someone that we're
    concerned about. If you are interested, I can create a new, private message
    board just for IC support group leaders to meet, talk, and compare their
    ideas. Sound interesting?

    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,

    Jill Osborne, M.A.
    SGL, IC-Redwood Empire - 1993-2000

    Founder, Interstitial Cystitis Network

    5636 Del Monte Court
    Santa Rosa, CA USA 95409
    (707)538-9442 - Voice
    (707)538-9444 - FAX
    E-mail: [email protected]

    p.s. Many thanks to those former ICA group leaders & state coordinators who
    helped to write and review this letter! You know who you are!

    Have you signed up for the ICN e-newsletter? You can find instructions at:

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    medical consultations with a qualified medical professional.
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