If we can motivate 3000 TMA members to raise $1000 per year, we will have $3 million per year to fund TM research!

Transverse Myelitis Association
Volume 5 Issue 1
December 2002
Page 7

If we can motivate 3000 TMA members to raise $1000 per year, we will have $3 million per year to fund TM research!

The TM research that is being performed at the Johns Hopkins Transverse Myelitis Center is very exciting. That we have one of the premier medical centers in the country and the world interested in TM is the most hopeful development to occur for all of us in the TM community. There is so much potential in what can be accomplished from basic and clinical TM research at the JHTMC. There are other doctors interested in TM research from other medical centers around the country. Most of the physicians on our medical advisory board are doing research in TM or in areas related to TM. If we were funding this research, it would be research directly on TM. There are physicians and scientists doing a great deal of research on areas that are related to TM, both in the areas of improved treatments for symptoms and in cure research; this can be seen in a review of the program agenda from the 2001 International TM Symposium in Baltimore. If the TMA were funding TM research, these are the physicians and scientists who would be interested in pursuing this funding for basic and clinical research. Outside of the federal government, which has yet to make a commitment to fund TM research, it is going to be the TMA that makes the long-term and sustained commitment to funding TM research, and only TM research.

This has been a watershed year for me in regards to my work with The Transverse Myelitis Association. I have learned so much. It has certainly been my busiest year doing work for the Association. So busy, in fact, that I never had a chance to publish the second newsletter this year. And for that I am so sorry. Honestly, I deeply apologize for missing this newsletter. I know just how important these communications are for our membership. This is one of the lessons I learned this year; I am not allowed to become so busy on one project that other projects do not get completed. I was busy planning the TMA Children’s and Family Workshop. From July 10th 2001 until the workshop started on July 18th 2002, I spent every single day raising money. And I do mean every single day. The good news is that I was able to raise over $70,000. The bad news is that I was only able to raise $70,000. From my background and perspective, this is a lot of money. From the perspective of effort and the time I committed to this endeavor, it is not a lot of money. And I was raising this money for children. It should be easy to raise money for children who have Transverse Myelitis. It was not easy.

Oh, the lessons learned. First, I want to thank all of the TMA members who made generous contributions to the Children’s Workshop. We could not have done this without you. And what we did for these children and their families was just awesome beyond words to describe. The parents learned so much and the children had a great time. The children met others with TM that they will stay in touch with for the rest of their lives. These kids really bonded during the workshop. The parents were able to spend a weekend together sharing and learning. They needed this time with each other.

I was so touched by the generosity of our membership; please go to the Children’s and Family Workshop page on our web site and review the list of contributors. We received tremendous support from our TM community. A group of parents really made an exceptional effort to raise the dollars for the workshop: Jack and Joanne Callahan (the Claddagh Foundation); Cody and Shelley Unser (the Cody Unser Firststep Foundation); Maureen and Walter Hallagan; Steve and Colleen Blandford; Cathy and Dan Dorocak; Tom and Jeanne Hamilton; Gail Hirsch; Morgan and Pam Hoge; and Rickey and Jenita Woods. Thank you so much to everyone who helped to make this happen.

I committed to everyone who made a donation that every penny above our costs for the workshop would go into our TM research fund. We are completing the final bills for the workshop, but because we begged and borrowed so many of the goods and services for the workshop, close to $40,000 from this fundraising is going to be added to our TM research fund.

This is all great news. So, what’s with the lessons?

When I first became involved in the Association work, I told Pauline that I would do anything to help people and to help the TMA. But I did not want to get involved in the money part of this thing – not at all. It was not that I didn’t have an interest in it; I was allergic to the idea of being involved with the money side of the work. And I avoided it for a long time. We have never had membership fees. We weren’t raising much money, and it was easier to pay for everything out of pocket than it was to start asking people for money. We operated this way for a long time; this is all evident from the financial statements we publish each year. The costs finally became greater than we could afford to cover, and out of necessity, we began seeking contributions from our members with some earnestness; okay, with outright desperation. Thus the remittance envelope appeared.

The Association was growing. The membership was certainly growing quickly. Dr. Levy initiated our medical advisory board. Dr. Kerr established the Johns Hopkins Transverse Myelitis Center. The activities of our small organization began to become much more complex and the work intensified. But more than anything, the potential for what we could accomplish began to explode. With the focus on TM at Johns Hopkins, doing TM research was no longer a hoped for goal; it was a reality. And my not being involved with money issues was no longer realistic. If I was going to do my job; if I wanted to see the goals of the TMA accomplished; if I wanted to see the people I love benefit from the results of TM research, I was going to need to become very involved in fundraising.

So, I have become involved. For the past year, I was involved every day. Where do I focus my energy now – on getting you involved! I have to get you involved. I cannot do this alone. That was another lesson learned this year. In 365 days I raised $70,000; that is not enough money for our operational needs and our research needs.

Here are some additional lessons….

The pharmaceutical companies are not going to fund TM research. If there are 34,000 people in the United States with TM, we are never going to look like a market to these companies. They do research and they develop medications that benefit TM patients, but they are not going to be directly involved in funding TM research. I spoke with representatives from all of the companies who manufacture the medicines that all of you are taking. In almost every case, the conversation began with my having to describe and explain Transverse Myelitis. Most had never heard of it. Those who had did not know anything about it. Do not count on TM research being done by pharmaceutical companies.

Foundations are not falling all over themselves anxiously waiting to fund TM research. I could wallpaper my kitchen with the rejection letters I received from foundations that fund health-related organizations. Again, I was applying for money to help children. Many of these grant applications went to foundations that specifically fund health-related education and some are focused on spinal cord injuries and diseases. From all of the foundation applications, we received only one foundation grant; and that grant was facilitated by a physiatrist on their board who understood TM.

Medical supply companies and adaptive equipment manufacturers were great. We received grants from many of the local companies that work with TM patients and from national manufacturing and distribution companies. Most are not in the same league as the pharmaceutical companies. Their grants were small, and they are not ordinarily involved in funding basic research.

These were all difficult lessons for me, because I take all of these issues so personally. The failures are painful. I would receive an envelope from one of these companies and foundations in the mail, and Pauline would hide under the couch while I opened it. Almost all of the time I had the opportunity to become outraged; almost all of them were rejections. “How could they reject us? The quality of this program is outstanding; just look at the quality of our presenters. We are helping children who really need this help. Who could be doing something more worthy with these dollars? This stinks!” Then Pauline would get out from under the couch and ask me to please not have a heart attack. How can you not take this personally?

The most important lesson … far and away the greatest support I received for the workshop came from other people who have TM and from my family and friends who understand what TM has done to Pauline’s life and from the family and friends of the people in the TM community.

As I have written before, and as I will write many more times in the future, if we are going to raise money for TM research, we are going to have to be the people who do it. Do not look to anyone else to accomplish this task; no one else is going to do it. So, I have to raise money, and I have to convince you that you have to raise money. And then I have to motivate you to raise money. And that is a lot of work about money from someone who does not want to be involved with the money part of this job.

I know American culture. In fact, I’m a cultural anthropologist, so I am supposed to understand American culture really well. I think I do. And I think we’re fascinating.

I want to share with you some of what I believe gives the TMA credibility in asking you to get involved with fundraising and also in asking you for donations.

No one who works for the TMA gets paid. We spend hundreds and hundreds of hours of our time and do so entirely on a voluntary basis. The TMA has no employees whatsoever. We have almost no overhead. The officers of the Association pay for their own computer equipment and supplies, office equipment, office supplies, internet access, phone bills, including long-distance phone bills and we all work out of our homes. All of the funds we receive go directly to offering services to our members. The vast majority of our operating costs are for the printing of information that is distributed to our members and for postage.

We are frugal about every penny we spend. If we can get it donated, we try to get it donated. If doing it ourselves will save a few dollars, we do it ourselves. I was at a meeting recently and was explaining the process I use to publish and mail the TMA newsletters and directories to thousands of people in more than 60 countries. When I completed my description, a person in the audience remarked that she was also involved in mailing a newsletter and it sure sounded as though I was doing this the hard way. Believe me, I know I am doing this the hard way. The easy way would be for me to pay a company to do all of the collating, stuffing, sealing, labeling, sorting and mailing. Unfortunately, there is a cost associated with every one of these steps. The more steps I do, the less the total cost of the job. So, I manually sort the zip codes for a bulk mailing. My eighty year old father and twenty year old mother go through the more than 3600 labels and systematically put them onto all of the envelopes. I have already put return labels on each of these envelopes and have stamped the postage on them. Then I invite family and friends over to my house for a weekend to collate, stuff and seal. Finally, I take a day off of work, borrow my ex-wife’s truck, and take a truckload of sacks to the post office. It sounds gruesome, it is gruesome, but it saves us a lot of money. Money that we would rather see go to TM research.

We have not used TMA resources to pay for travel. When the TMA board members travel to a symposium, they pay their own travel, hotel and food expenses. The board members pay their own registration fees. Board members pay their own way to Board meetings. When the Johns Hopkins TM Center opened, we thought it was important to have the Board represented at this auspicious occasion. Our representative, Dick Gilmur, paid his own expenses to get to Baltimore for this event.

Beyond the printing of our remittance envelope, we do not use TMA operating funds for the purpose of fundraising.

Americans want their organizations honest, open, frugal, and smart about how they spend money and invest money. What Americans want from non-profit organizations is all of these qualities to the tenth power.   We have worked very hard since 1994 to build your trust in the TMA and to build our credibility. You should emphasize all of these characteristics of the TMA when you are fundraising among your family and friends. We are very proud of the TMA; you should be also.

Why do we need TM research and why should you care about it? We need TM research because TM is not MS, it is not Devics, it is not a traumatic spinal cord injury. We need for the doctors to figure out what the disease process is for TM. What is TM? What causes TM? As you read in the JHTMC research article, the doctors are just now beginning to search for the answers to these most basic questions. TM research will result in a better understanding of the disease, and it will result in better approaches to treating people at the onset. Will that research help Pauline or Cody or Jim or Rachel or Kevin or Stephen or Maureen? Probably not. But I would never want for another person to go through what our loved ones have experienced. If we can help them, we should. No one else is going to help them. It is us or no one. Are we getting the picture yet?

You should be interested in supporting TM research because this research is going to result in improved approaches for treating TM symptoms. Symptom management research is one of the important areas of concern at the JHTMC. TM research at the JHTMC is also focused on cure research. One of the most exciting discoveries in this research is that only small increments of physical improvement can result in significant functional gains for a person with spinal cord injury or disease, such as TM. I am so hopeful for this exciting future. And I want this future to arrive as quickly as possible.

There is another very important reason to consider funding TM research. It is the case that the research being performed on traumatic spinal cord injury and myelin regeneration, as well as in other areas of medicine has a positive benefit for TM patients. When it comes time for clinical trials, however, I am not at all certain where TM patients are going to fit into the schemes of some of these institutions. It may be that those institutions that have been heavily funded by families who have been impacted by traumatic spinal cord injury only want clinical trials focused on those patients. It may also be that there are considerations about the characteristics of the trial population which would discourage the inclusion of TM patients. I had a discussion about this issue with Dr. Kerr. This is the information he shared with me about research and clinical trials:

There are significant similarities and parallels between traumatic and non-traumatic spinal cord injury (SCI). It is important to understand this and draw knowledge from fields related to Acute Transverse Myelitis. Fundamentally, there are common pathways of neuronal death even if the initial injury is distinct and varied. However, there are basic differences both in the acute phase and long after initial injury between traumatic and non-traumatic SCI. The extent of scar tissue is much more in traumatic SCI, the distribution of injury in the spinal cord is different, cellular glial reaction to injury is different between the two. It is, therefore, at least probable that the fundamental mechanism of regeneration will also differ. Thus, to fund traumatic SCI centers will beget clinical trials in traumatic SCI only. No trial will enroll patients with both. The only way to conduct clinical trial research in ATM is to generate a better understanding of this and only this disease process (Dr. Kerr, personal communication).

When the time comes that there are clinical trials available at the Johns Hopkins Transverse Myelitis Center, only TM patients will be included in these clinical trials. And as you have read in the previous article, the clinical trials will concern both improved treatments for TM symptoms and procedures to restore myelin and nerve cells.

I have been asked over the years how much it would cost to fund TM research projects. The following information should help you understand something of the scope and costs associated with medical research. There is basic science research and then there are clinical trials. I have categorized each class of research into small, medium and large project categories.

In regards to basic science research, the total cost of a small project might be from between $15,000 to $30,000 per year for three years. The costs would cover such expenses as 50% of a technician’s salary and supplies, such as equipment and reagents. A medium grant might be for about $100,000 per year for three to five years and very often involves salary support for the principal investigator, as well as salary support for a graduate student, a technician and a post doctoral student with about $40,000 of costs associated with equipment and reagents. A large basic science grant would focus on one broad research subject with different sub-projects and goals. Typically, the costs of large projects would be from $250,000 to $300,000 per year for three to five years. The costs would include approximately 30% of the principal investigator’s salary support, the support of two technicians, a graduate student and a post doctoral student and about $150,000 for reagents and supplies.

A small grant for clinical research could cost anywhere from $50,000 to more than $100,000 per year. The money is typically used to provide salary support so that a researcher’s time may be used to carry out clinical research. Small projects do not involve clinical trials.

Medium to large clinical trials are driven by those who will profit from them. These are projects with costs that are typically between $500,000 and $1.5 million per year.   Very rarely are these projects supported by private foundations; they are generally funded by such entities as pharmaceutical companies and stem cell companies. The grants cover the salaries for a principal investigator, a nurse, a clinical coordinator, and a center coordinator, as well as other equipment and supplies.

So, here is the challenge for you and me. First, we need to keep The Transverse Myelitis Association operating. If you are in a financial position to help us, please use the remittance envelope and send us a donation to help us with our operating expenses. Please keep in mind that the only support we receive comes from those of you in the TM community.

And the second and bigger challenge is that we need to hold ourselves accountable for raising money for research. You do not need to be wealthy to do this fundraising. You do not need wealthy friends and family to do this fundraising. You only need to be motivated. Please read the articles about how people are raising money for the TMA; hopping, shooting hoops, reading books, playing golf, having dinner parties, holding raffles. There are so many different ways to raise money. How you do it is really not the primary issue. The focus of the activity is to approach those people who are closest to you; your family, your friends, your neighbors, your co-workers. These are the people who have the most intimate knowledge of how TM has impacted your life and these are also the people who care about you the most. These are the people who will offer you the greatest financial help. You ask them to sponsor you for the number of books you read or the number of times you hop or the number of hoops you make; what you do to raise the money should be motivated by your interests. The important focus should be to get these people involved and to keep them involved.

Our challenge is not to do a fundraiser; our challenge is to do this fundraiser every year. We will not succeed at our goals if we raise money for TM research one year and then take a nap on the couch for a couple of years. Once we begin to fund TM research, we will not be taken seriously by the medical and scientific community unless we are able to sustain TM research on a regular basis.

Here’s what I am going to do to meet my end of the bargain. I am going to have a golf outing every year. I love the game of golf, so this is an activity that I can do every year. If I chose an activity that I do not have a passion for, I know I will not be able to do it every year. I am going to approach my family and my closest friends and also the people with TM in my community, and their family and friends and I am going to invite them to get involved in the planning of the golf outing. I will be able to raise much more than my $1000 share from this fundraiser and I know that I can create a social opportunity for people in my community with TM, and I know that I can also create some awareness about TM in my community. Pauline is meeting her commitment to fundraising by participating in the Reading for Rachel Program in her school and in all of the elementary schools in her district. Pauline will also be available to tell me everything I am doing wrong while conducting the golf outing.

Are we going to have to raise this money for research forever and ever? I hope not. I do eventually want to go lie down on the couch, eat a sandwich, and give a Browns game my undivided attention. It is my great hope that the NIH will eventually focus on and fund TM research. But I have no control over the NIH, so I have no idea if and when they are going to do the right thing. I only have control over me. So, I need to do what I can.

Funding TM research should not be an American issue. Over the years I have come to feel a close kinship with our TM community around the world. I have gone from offering information and support to people in need to experiencing friendships with people for whom I deeply care and love. We are an international TM community. So, Steve and Ali, and Errol, and Ulrika, and Ursula, and Tanishka, Yvonne, Geoff, Ann, Ian, Mary-Jo, Mette and Thomas, Roland, Netta this research is for you also. What the JHTMC learns about treating TM patients and curing TM patients, will be shared with your doctors in your countries. Dr. Kerr is already working with physicians from all over the world. He will consult with doctors from all over the world and he will share research results with doctors all over the world. We need your help. Please get involved in fundraising for TM research! And please encourage the members from the TM communities in your countries to get involved, as well.

So, when is the TMA going to begin funding TM research? I don’t know. Here is what I do know. We cannot raise $100,000, fund three small basic science projects, and then have to wait three years before we raise enough money to make available the next request for research proposals. In the three years the TMA is absent from the scene, physicians and scientists will find new hobbies. We have to be able to make a commitment to fundraising that is sufficient for the scientists to be willing to make a commitment to TM research. I think that is the bargain. We will begin to fund research when there is a steady and fairly predictable stream of funds being generated for TM research.

This is going to happen as soon as I can figure out how to motivate all of you to get involved and raise TM research dollars. If it takes a year, I will be delighted. If it takes ten years, I will be less delighted, but I will be satisfied. I am not going to get discouraged about how long this takes; but we are going to do this. We have to do this. We owe this to those of you who have suffered with TM for decades; we owe this to those of you who have suffered with TM for the past couple of weeks. We owe this to the people who are going to contract TM tomorrow. We owe this to the children with TM who are just beginning their lives.

I remain allergic to the money thing. But you have all changed me. I know what is possible for you.   I know what needs to be done for you … days without pain, days with control over your bowels and bladder, being able to share a totally and mutually satisfying physical sexual experience with your companion, being able to carry the trash to the curb. I will remain committed to this goal, however long it takes. We are going to raise this money; we have to make this research happen.

One final point, we have a wonderful, incredibly competent, committed medical advisory board. The physicians on our board are researchers and scientists, as well as physicians. They are going to help us design the research program and the process for requesting, reviewing and awarding grants. We are going to rely on their wealth of experience and expertise in this area. The TMA board is going to be well-guided by the medical advisory board in developing a program that will attract the best researchers and the best research projects.

I can remember talking about funding TM research before I knew Dr. Kerr and before there was a JHTMC. I knew this was something we should do and that we needed to do. But my notion of this research was almost ephemeral; I did not know anyone who was doing anything that looked remotely like TM research. Well, that situation has certainly changed. TM research is being done, and we have a group of brilliant doctors who are doing all kinds of research related to TM. Given the money, we will attract them to doing TM research. An ephemeral notion has evolved into a sense of urgency about not losing an opportunity.

Please get involved. Please make a commitment to raising research dollars. Please make the commitment to raising these dollars from your family and friends every year. We can make a difference for ourselves and for those in the future who are going to suffer with these same horrible symptoms. Please help me help them! Please help me help you!

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