My column in this issue is about money. I know, you would probably rather that I was writing about sex.

The Transverse Myelitis Association has grown so much since the Gilmurs first started our organization in 1994. We have grown in size, we have grown in both the quantity and quality of services we are able to provide to our members and we have certainly grown in stature. It has become absolutely obvious to me in the past couple of years that the TMA has grown most substantially in terms of potential. We are finally in a place to do so much more for our members. And what separates us from this reality is money.

First, let me assure you that we are seeking funds from the government, from foundations, and from pharmaceutical companies and from adaptive equipment manufacturers. These are institutions and organizations that we believe should have an interest in our Association and our membership. They should want to help us with our education, outreach and support efforts, and they should want to support TM research. We will continue to pursue funding from these sources.

This column is about the need for money and our TMA membership. I have said many times before, people give to the causes with which they have an emotional connection. In the case of health-related societies or associations, I give to those organizations based on whether a family member or a good friend had a particular disease or disorder. I believe that it works this way for most people. We want to make a difference in people's lives based on our personal experiences. In a sense, the process of giving to help others is a part of our own healing process for the losses we may have experienced that were caused by the disease or disorder.

Let's do the math. We have about 3300 people in our membership from all over the United States and from all over the world. Our membership is growing by around ten to twenty people per week. The back-of-the-envelope calculation is that there are about 34,000 people in the United States with TM, and that there are approximately 1200 to 1400 new cases each year. If we are going to help ourselves, 3300 people are going to have to do a great deal more than we are currently doing to make a difference - and the difference we are trying to make is in our own lives. The sad reality is that if you are waiting for someone else to do it for you, it isn't going to happen. They have their own diseases or disorders to worry about, and they are not going to be supporting our cause. Chances are, they don't have TM, they don't know anyone who has it, and they've never heard of it. They sure are not going to be sending any cash our way.

With just 3300 members emotionally connected to transverse myelitis, all 3300 of us need to be involved in giving money and/or raising money for our cause.

The Transverse Myelitis Association does not have a membership fee. It has been a fundamental principle of our Association that access to information and support should not come at a price. Unfortunately, however, information and support does create a cost. And someone is bearing the cost. Who is bearing the cost is published once a year with our annual financial report. And I need to be perfectly clear about this also, we are so grateful for all of the support we get from our membership. We appreciate your generosity and we are humbled by your trust in us. Now, count the numbers of people who are bearing the load for our group. It is instructive to go back a few years. As we grow, it remains a fairly small number and proportion of people who support what we do for 3300 people and growing.

If you are reading this column, TM has changed your life in some way. For most of you, it has changed your lives in the most fundamental ways. It has changed you, it has changed your family and it has changed your friends and neighbors. It is you, and your family and your friends and neighbors who have to make the difference. You are the people who are going to support our efforts. No one else is going to do it. And if you don't do it, it is not going to happen.

I left Baltimore in mid July with an incredible sense of hope - more hope than I could have even imagined just a short year ago. Really, what incredible progress we heard about from these brilliant scientists and physicians. They are thinking about TM and they are talking about TM. And I left Baltimore filled with an enormous amount of frustration. Why frustration, because unless we are able to raise sufficient funds to encourage these research scientists to focus on TM, they won't. They will focus on MS, they will focus on Parkinsons, they will focus on ALS; all deserving of their focus. All worthy causes; people with MS, Parkinsons and ALS need their research and treatments and hopes for a cure. But so do we!

We will and we do benefit from the research in these areas, but it is tangential and it remains on the periphery. We want them looking straight at TM. We want them thinking about TM while they are eating their Cheerios in the morning; we want them obsessed with TM. That is the only way they are going to find better treatments for TM and that is the only way they are going to find a cure for it.

Let me put this out there in the most basic way. The doctors do not know what you have. They do not understand the cause or causes of TM, they are uncertain of the treatments, and there is definitely no cure. As we are all acutely aware, all of this uncertainty is not a good thing. The doctors at this Symposium want to initiate a process that would define "Transverse Myelitis." Pretty basic stuff. They want to define the diagnostic characteristics of TM. Then they want to begin research on possible treatments that could stop the demyelinating attacks before they do much damage to the myelin and nerve cells in the spinal cord. One might think that you could just invite thirty or forty of these people into your living room on a Sunday afternoon, feed them deli sandwiches and potato chips and have them discuss and resolve these issues. Well, it doesn't work that way. It is going to cost thousands and thousands of dollars to get these scientists and researchers and physicians together to agree upon a definition of TM, to define the diagnostic and treatment protocols. Thus far, the National Institute of Health has not been willing to fund this effort.

If we cannot get the most fundamental questions looked at - what is it - how are we going to get the most complicated questions looked at - how do you cure it?

The Transverse Myelitis Association needs to be involved in the funding of TM research. We know that this needs to be done; we aren't going to count on anyone else to do it. We just need a lot of money. We need your help.

I have contributed a lot of money to The Transverse Myelitis Association. It is a lot for my income and my standard of living. Unfortunately, even with two jobs, I am not going to be able to come up with enough money to fund TM research. So, I decided that I had to do more. The TMA is planning a Children's and Family Workshop for next summer. I decided that I was going to send a fundraising letter to every single person I know. I am explaining how TM has changed Pauline's and my life, and I am asking that through their love and concern for us, that they allow TM to change their lives, as well. I am asking for them to make a contribution to The TMA to help us fund the workshop. If from this effort we collect more than what we need for the workshop, we will use these resources to fund TM research. This letter is going to every member of my family, to every friend I have from preschool to high school to college to graduate school, to members of my synagogue, to my insurance agent, to my doctors, and dentist and co-workers; everyone I know. If I had a barber, I would send the letter to my barber.

I am hoping that I can motivate our Association members to join me in this effort. People donate money to worthy causes all the time - why shouldn't they donate to our cause; to your cause. How long are we willing to wait for an answer to: what is TM? My goal is simple: we need to raise $150,000 for the Children's and Family Workshop by March 2002. The rest of my goal is to so seriously motivate the TMA membership to raise $150,000 that we end up with $150 million for TM research.

We have a group of incredible scientists who are at the threshold of some remarkable discoveries and some of these findings are going to impact how they think about and treat TM. They are interested in TM. How interested is going to depend almost entirely on whether there is money to fund their research. If the money comes from The Transverse Myelitis Association, the research questions are going to be framed entirely from the perspective of TM issues. If the money comes from somewhere else, the questions will not focus on TM, and the benefits will be far less direct - or the benefits will be minimal for TM patients.

I often hear people say, well, I'm interested in getting involved, but I just don't know what to do. The Blandfords have a pre-schooler with TM. The pre-school had a hop-a-thon to raise money for The Transverse Myelitis Association. They raised more than $4000 from these children hopping in place. The Dorocaks raise thousands of dollars from the Reading for Rachel Program. It is easy to do and all of the instructions and materials you need can be found on our web site. The Hamiltons raised almost $50,000 this year from raffles and a neighborhood picnic bar-b-que. The Callahans raise thousands of dollars every year from a golf outing and other activities. Paula's brother, Buddy, also has a golf outing for the TMA every year. Heather O'dell has been raising money from car washes. Gunny is out raising money for the TM cause in many different ways; he wrote a book about his experience with TM, got it published and is donating the proceeds for TM research. Lori Biehler and Beth Lekander have been finding all sorts of unique items to sell to raise money for the TMA. Lori is about to begin a raffle for a Harley Davidson Motorcycle. Deana Green and her friend generously donated their brother's wonderful paintings to be sold to support the TMA. Ann Moran solicited quilting squares from TM members from all over the world. She lovingly created a quilt from these donated squares and is selling this international quilt to raise funds for the TMA. We have people involved in all sorts of fundraising efforts; we had a group of junior high school students participate in a marathon volleyball game to raise money. I don't think it is really about how - it is really about the motivation to just go do it.

Jim has posted a link on our web site, which was designed to help children initiate and organize a fundraising project. It is called The YouthNOISE Raise and Donate Toolkit. The link for this site can be found on our web site at: http://www.myelitis.org/fundraising. While the site was designed for children, adults would also find this information useful in getting a fundraising project started.

People willingly support the causes and the institutions that they believe in and trust. We should encourage people to support our cause. And I am imploring you to support our cause. I used to support a number of important causes - from social organizations to religious organizations to healthcare associations. Today, I support far fewer organizations and even with the few that I do support, I provide them with much less than I have in the past. I devote what resources I have to The Transverse Myelitis Association. Most of the charitable organizations I made contributions to in the past had fairly large bases of support. The prevalence of cancer and heart disease is very high; the numbers of people who have emotional connections to those causes are likewise very high. I have focused my financial resources on The Transverse Myelitis Association based on the very simple fact that if I do not take care of my own issues, who is going to do it.

Please ask yourselves the same question - if you do not take care of yourselves and each other, who is going to take care of us? I implore each of you to take care of us.

Please contribute what you are able to afford to contribute. We know that for some of you, many of you, you are unable to make a contribution; and that is why there is no membership fee. But even if you are unable to make a contribution, you can get involved in fundraising efforts. Please do so. Send a letter to everyone you know. Have a bake sale. Participate in Reading for Rachel. Have a hop-a-thon.

If you have experience with raising funds for organizations such as ours, we need your help. Please help us make a difference in your life and the lives of the people you have come to know and care about through the TMA.

The Transverse Myelitis Association requires sufficient funding to continue to provide our current services and to expand our services as great opportunities arise. We need funding to continue to operate. At our last board meeting, Paula reported that to date, this year, we had spent $4000 more than we had received in contributions. We were not running a deficit, only because we had a balance in our operating account from the previous year. I was shocked. Our expenses to that point were almost exclusively printing and postage costs. I'm not sure, exactly, what "overhead" means, but I don't think we have any. We use our operating funds to pay for the services we offer to our members. We do not have offices, so we do not pay any rent, we pay our own phone bills, we pay for our own Internet access, and we purchase most of our own supplies. And no one is paid for anything they do. Even many of the support services we receive, for instance from the graphic artist, are contributed at no cost to the Association. How could it be that we were not receiving enough contributions to cover printing and postage? We need to do more to support this Association if we are to continue to grow and offer our current services.

Our membership needs to do more … in California, New York, Ohio, Michigan, Texas, Washington, Germany, England, Brazil, Australia, France, India, Mexico, Italy, Spain, Scotland, Portugal, Ireland, New Zealand, Canada, Denmark, Argentina…. We can all do more.

I got involved in this endeavor, because I love Pauline, and I care about her so much, and I want her life to be without pain. I want for her to have her full life back. I know she is grateful for what recovery she has had, but I also know what she lost. That is where it starts for me and that is where it ends for me … Pauline. In between, there are the hundreds of people I have spoken to on the phone, emailed, and met and hugged, who have totally changed my life. I have been changed in the most profound ways by all of you. And I believe that is where it is for all of us. We have come to care about each other … but we care most about ourselves. So, what I am asking you to do; what I am pleading for you to do, is help yourself. I believe we can make a difference in your lives. Help us do that for you. Focus your resources on the cause that has most impacted your life. Get yourself motivated to focus the attention and resources of your friends and loved ones on our cause. Use your influence and skills and creativity to raise money for our cause; for your cause.

Please take good care of yourselves, and each other.