Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

Through the years, I have started and incorporated two non-profit educational organizations, and have worked closely with a health-related support group. The following suggestions and ideas come out of my experience with both.

To Incorporate or Not
Contrary to popular opinion, in most states, you do not need to pay an attorney or accountant to form and incorporate a company or apply for non-profit status for that company. Information on forming a nonprofit corporation can be found online in your state's website, generally in the Department of Corporations section. They provide the boilerplate paperwork, including By Laws and Articles of Incorporation. In many cases, you can apply for a waiver of the corporation filing fees on the basis of your being a nonprofit (in California, that can save you $900+). For additional information, including obtaining tax-exempt recognition by the IRS, please see my Starting A Herp Society article.

What does being incorporated get you, besides a lot of paperwork to be completed and created in the beginning, and annual filings? In many communities, free or low-cost meeting space is hard to find as there is a huge demand by all the existing health-related, hobby, civic and other groups. Many cities and counties will steeply discount their rental rate for incorporated nonprofits, or will provide the space to them for free. Being incorporated means that they can, if they wish, write off their donation of meeting space on their taxes.

Being incorporated as a nonprofit may make it easier to convince local businesses to give you a break on the cost of their services provided to your group, such as photocopying costs. It may make it easier to get donations from individuals, too, as straight donations to your group, of money or equipment, may be tax deductible for them.

Information and Support…or Pity Pot Party?
You need to decide which you want your group to be. Do you want to provide a supportive environment in which people can learn about their health problems and what the research, treatment, and pitfalls are, learning from knowledgeable speakers and from one another's experiences? Or do you want a gathering where everyone moans and whines about how horrible their life has become?

Information…or Infomercial?
Once your group starts getting known in the community, you are going to become the target of every snake oil salesperson wanting to pitch their product or service to your members. If that's what you want - every vitamin/magnet/emu oil/mattress/new age mystic - than that's fine. If you are looking instead to provide solid information to your members, then you are going to have to learn how to screen.

It takes a lot of time and energy to track down, approach, schedule and confirm knowledgeable health care practitioners, disability attorneys, social services representatives, etc., to speak to your group. I know from experience that it's real tempting to shout "Yes!" to whomever calls or writes you asking to speak to your group. But if you want your meetings to be more than a series of infomercials for the latest multi-market scam, or chiropractor whose "cure" for FM and CFS consists of telling your members that all they need to do is to forgive everyone and get a spinal adjustment, well, learn to screen.

Web Presence
Along with getting your group's meetings mentioned in the local newspaper, and your group's contact information on the cable TV company's community bulletin channel, get yourself on the WWW.

Create a webpage or find someone who will do that for your group. It doesn't have to be anything fancy or in depth, but you at least want enough information on it so that people who are looking for such a support group can contact you (or the designated contact). Be sure to provide a telephone number (and appropriate times to call) as well as an email address, a mailing address, and basic information on when and where your meetings are (once you know when and where).

The information and support group I currently direct has its own domain name (www.tcnsupport.org), and our site contains information that provides sufficient information so that people who do not feel comfortable cold-calling strangers can leave our site armed with a tremendous amount of information: when and where our meetings are, including written directions and a link to a map; our scheduled speakers; our resource directory (health care practitioners, attorneys, social services knowledgeable/useful for people with our illnesses); and various frequently requested publications in PDF format.

Get your group listed on the site of the support network directory for your state. For example, I maintain a state-wide directory of all CFS and FM support groups in California, by county, www.cacfsfms.org. California groups contact me to get their group added to the directory, and notify me when their information changes.

I also maintain a directory of Support Groups by State, which provides links to the state level networks, such as my California Directory. You can use this directory to find the state network in your state. If one doesn't yet exist for your state, think about starting one.

Community Resources
In many counties, there is a nonprofit entity that provides resources and information to nonprofit organizations within the county. The entity often maintains a listing or database of all the nonprofits in the area - contact them to find out how to get your organization listed.

Contact the public library's reference librarian to see if they have a community resources listing. Many do, either in the form of a notebook listing all the nonprofit organizations in the county, or a searchable database available on their computer system. If they do maintain such a resource, find out how to get your group added.

Is there a U.S. Health Library in your area? If so, contact them to find out how to get your group listed. Since they are open to the public and frequently are contacted by the general public who are looking for health-related support groups, they need to know about your group. While you are at it, ask if they have anyone who can give a talk to your group on how to research health information on the Internet, and how to generally assess health information on the web and in print.

Keep On Keeping On
Once you get a group up and running, you will probably find that you are pretty much doing it all by yourself. At the very least, that will mean lining up speakers or videos, physically arranging the tables and chairs, schlepping and setting up (and packing away again) any literature you bring to meetings, and spending time on the phone with cold callers and people who have come to your meetings.

If you get more formal with the group, you may end up producing some sort of newsletter, and charging an annual subscription or membership fee to pay the ever increasing costs of copying and mailing the newsletter, as well as to cover the costs of all the other photocopying and materials acquisition for the group….unless you are financially able to pay for everything out of your own pocket. This means not only compiling and creating the newsletter (and getting it copied, addressed, stamped and mailed) but having to create and maintain a membership database and track subscriptions/memberships.

As time goes on, you will hear various people complain about how you are doing things, or request you/the group provide other services, materials, or make suggestions, etc. Keep in mind that you can only do so much. It is all too easy to get into the habit of doing too much and thus eventually burning yourself out. It's also difficult not only to get others to volunteer, but to actually get volunteers who actually do what they've volunteered to do. I've seen and heard of too many instances where individuals with the best of intentions volunteer to take on an ongoing task, but they disappear without ever having actually done any of the work, or after a month or two.

Twice I found myself in that position. Once was with the support group, when only one person helped (doing the treasurer functions as well as getting the newsletter I produced copied, labeled with the labels I printed from the membership records I maintained, stamped and mailed). I did everything else. We repeatedly put out calls for volunteers to take on single tasks, to no avail. The day finally came, as it did with the other group I ran, to let members know that if people didn't step up to the plate, there would be no more meetings, no more newsletters, no more group after the end of the calendar year. Thankfully, people did step up and, in both cases, have kept the group going.

It is critical to your own health, mental as well as physical, that you develop ways to de-stress yourself. You also may need to learn how to tell people, nicely, that if they want things done, or done a certain way (that makes sense - there being a lot of bad ways to do things!), they are more than welcome to pitch in as a volunteer and do it themselves.

Bottom Line
When you start and help run an information and support group, you aren't just getting the benefit of the information and support that the group provides, but there is satisfaction in knowing that, by your efforts, you are helping others to get that same information and support. Considering how much we have lost due to our illness-our jobs, our income, our sense of self-worth-starting and helping run a support group goes a long way towards healing some of that hurt.

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