Fundraising: What You Might Do to Help the TMA
Sandy Siegel

Deanne, Dick and Paula are in the process of finalizing arrangements for the first TMA Symposium, August 12-15, 1999 in Seattle, Washington. It is very exciting, because we know what is going to happen when you have the opportunity to be in a room together and begin to share your stories, your concerns, your fears, your hopes, your support, your lives.... This is a very important and exciting time for the TMA and for all of you, the members of your Association.

The Association has been involved in a fund-raising effort in order to acquire sufficient funds to put on the symposium. The finances are required to cover such expenses as the rental fee for the conference rooms, the travel expenses for a few of our speakers, printing and mailing costs, and registration materials. There are many things the Association could do, if funds were available. The Association could pay for the banquet, for instance, if enough money were raised. The Association has not been able to raise anywhere near this kind of money from our inception to the present. So, this effort is a daunting task.

This brings me to you. Each of you and all of you. Deanne, Paula, Debbie, Jim and I have been involved in the fund-raising efforts. We have sent letters to the pharmaceutical companies; we went through all of the surveys, identified the medications that our members are taking and Drema's daughter, Heather, did an awesome job of matching all of the medications with the companies. Dick and Deanne have been searching for funding and submitting applications to both private foundations and government agencies. But there is not a single guarantee that any of this effort is going to result in a single penny of financial support. And there is no way we (the Association officers) are going to be able to do much more than we are currently doing to raise the funds that are needed. We have jobs, we have families, we have TM, we are caregivers, and we have the regular work of the Association that takes a great deal of time and effort from our lives. And we are in the process of planning and arranging a symposium.

We can't do this alone. We need your help. We are asking you to help us raise the funds so that this symposium is everything we want it to be for you. Some of you may know people who work for associations or foundations and may know some sources of funding. Some of you may work for companies who sponsor these types of things, and may be able to ask for support from them. Some of you may work for companies who will match funds that you raise on your own. Some of you may be like me, and don't know anyone with more than this month's mortgage payment, and will have to find smaller ways to raise money -- smaller, but no less ambitious. We have had people raise money for the Association with car washes, volley ball tournaments, all sorts of things. Your churches, synagogues, mosques, sweat lodges, temples (have I left anyone out) may be interested in supporting you and the Association's efforts by sponsoring a pancake breakfast, a pinochle party, bingo, or some other type of fund raising event.

We are asking you to do everything you can (that is legal and ethical) to help us raise the money for this symposium. If 40 people each raise $1000 -- we're there. If 80 people each raise $500 we're there. We received a check from a middle school in Illinois last year. A student from their school was diagnosed with Transverse Myelitis and the school had a volley ball tournament fundraiser -- those kids raised almost $500. Really boggles the mind.

Be resourceful and creative. Think about everyone you know who can help. Consider all of your contacts. And remind everyone that his or her contributions to the Association are completely tax deductible.

We are committed to putting on this symposium. It is going to happen if we do not raise a dollar. The Association will find a way to pay for the facility and then we will make do with what we can afford to do. We will still get people together, we will still offer the educational opportunities, and many good things will come out of it. But, there would be fewer people who would be able to attend, because the personal cost of the symposium would be much higher, and we would not be able to do as much for everyone as we would like to do.

It is implicit in our Association that there are some people who are unable to pay and there are others who are able to pay more. It is always our hope that those who are able to pay more will do so and help out those who are elderly and live on fixed incomes, or those who are on disability and also live on fixed incomes, or those who have medical expenses which force them to make decisions about heating their homes, feeding their families or buying their medications. We do have every conceivable situation among our members. What we share is a neurological condition -- our life circumstances are as different as you might imagine -- or not imagine. But what the Association offers in the way of support and education needs to be available to everyone. That is the reason why we have avoided using membership dues to cover our expenses. And what the symposium is going to offer should be available to everyone. The hard reality, however, is that it will cost people considerable sums of money to make the trip to Seattle from all over the country and all over the world.

We are asking you to help each other get to this symposium and help make it everything we would like it to be for you. We also have some suggestions for personal fundraising to help some of you think about ideas for raising the funds to travel to Seattle and to pay for your flights, rooms and meals. One of our members is engaged in this type of fund-raising with her family and in her community, and she will offer you some suggestions along these lines in the following article. These funds are not tax deductible, but there are lots of wonderful people in our families and communities who would help those of us who are in need of help get to a symposium, if they understood its significance for you -- and without Uncle Sam's tax deduction.

The more you raise, the more we can do for you, the less it will cost per person, the more people who will be able to attend. It is a fairly simple equation. I don't think that asking people for money is easy. It is hard for me. But I'm engaged in the process of doing just that because the good I see coming out of this symposium for me and for Pauline and for all of you is greater than my discomfort about asking people for money to support our effort. I am hoping that many...most of you will be able to find that same motivation.

I wish the Association had the money to do this without asking any of you to do anything. I wish we had enough foundation grant money, government grant money, whatever, to do this without asking for your help. Maybe some day we will be there. For now, we represent almost 1400 members. To most foundations and to the government, that is going to look pretty small. We have a lot of work to do to make 1400 people look large enough to support in every way -- and believe me, that is exactly what the Association intends to do -- if there were 125 of us, we would be worth all of the research, treatment, rehabilitation and social services our society can afford -- and we can afford about all that we need. But for now, we are small, we are very young, and we are very big plans, very little money. I wish the Association had enough money to subsidize the trip for individuals or families who cannot afford to attend. We don't have it. But we will try to help you find ways to do it.

We (Deanne, Sandy, Paula, Debbie, and Jim) will do what we can to raise money. But that may not be enough -- and I'm being totally straight with you -- it may not amount to anything. There are no guarantees from our fundraising efforts -- only that we will attempt to carry out our efforts with all of the energy and enthusiasm we can muster. We need to depend on you. All of you. Please take some responsibility. Someone out there may be able to find $10,000 or $20,000 -- stranger things have happened. And allow me to share a perspective. This isn't likely to happen by sending e-mail messages to Bill Gates asking for help. This is more likely going to happen by talking to people we know in our families, among our friends, with co-workers and employers...people we know in our communities ... in our lives. The e-mail messages are so easy to ignore. This is going to happen by approaching people who know us and care about us. It may be that those are the people we are most uncomfortable with approaching -- but that is where it is most likely going to happen.

Ask for help if you need it from us. Please also keep in mind that as you raise money for the Association, you represent the Association. So, if you plan to knock off the corner grocery store as your fundraising technique, please don't leave them a copy of our brochure. Really -- what I would ask you to keep in mind as a good rule of thumb about fundraising, when you ask for support, you should do so in a manner that would allow you or someone else from the Association to approach the same person for support in the future and have that person "feel good" about the Association, even if they tell you, "no, I'm not going to help you, go away." That's not easy to pull off, but I am asking you to do that for the Association. Thanks -- we appreciate it.

I am excited about meeting all of you in person. I am more excited about being in the room when all of you meet each other. Please own the task of raising the money to support this symposium. Please make it your personal responsibility to help yourself and to help your friends. Please help your Association make all of this possible for you.

I greatly appreciate your patience in getting through this message. Take care. I look forward to hearing from you. Paula Lazzeri looks forward to receiving all of your contributions. Please keep us posted. Good luck!