Love to you all, Drema
-----Original Message-----
From: Srulyosef(AT)aol.com <Srulyosef(AT)aol.com>
To: tmic-list(AT)eskimo.com <tmic-list(AT)eskimo.com>
Date: Thursday, October 22, 1998 4:29 PM
Subject: TMA Conference
>It is with considerable excitement and some anxiety that I tell you that
there
>will definitely be a first TMA Conference, August 12-15, 1999 in Seattle,
>Washington. Deanne, Dick and Paula are in the process of finalizing the
>contract with the hotel and conference facilities. It is very exciting,
>because we are experiencing the AssociationÆs evolution into a more
responsive
>organization. And it is most exciting, because we know what is going to
>happen when all of you -- those who are the tmic community as well as those
>folks with TM who do not even own a computer -- get in a room together and
>begin to share your stories, your concerns, your fears, your hopes, your
>lives.... This is a very important and exciting time for the TMA and for
all
>of you, the members of your Association.
>
>We have considered all of your ideas about what the conference should be
and
>what topics should be addressed in the educational portion of the meeting.
We
>are in the process of designing a program which attempts to address the
needs
>and desires you have expressed. It will offer lots of educational
>opportunities and it will offer lots of social opportunities. A specific
>program will be sent to you as soon as it is completed. The conference
will
>also include a childrenÆs program which will offer children with TM,
children
>of parents with TM, and siblings of a child with TM an opportunity to
>socialize -- have some interaction in a fun and empathetic environment.
>
>And some anxiety -- ok, more than some. This is going to be a long
message,
>by the way -- IÆm sorry, but there is a lot I have to share, and you are
the
>people I need to share this with.
>
>The Association has to raise about $40,000 in order to do this conference
>really well. That amount includes the conference rooms, the travel
expenses
>for a few of our speakers (we are primarily depending on experts from the
>Seattle area to minimize these costs), TMA sponsored dinners, lunches,
>breakfasts (we will not provide all of the meals, but we would like to be
able
>to offer more than half of them over this weekend), a childrenÆs program,
>printing and mailing costs, registration materials and other things that I
>canÆt think of off the top of my head. The Association has not been able
to
>raise anywhere near this kind of money from our inception to the present.
For
>the most part, we have done the work of the Association with money from
our
>personal finances, and in the past couple of years, our members have made
>contributions which have been just enough to cover our operating
expenses --
>and even here, we still try to use some of our personal finances so as not
to
>drain our balance to 0 ... which is what would happen if we covered all of
our
>Association expenses with Association dollars.
>
>So, this brings me to you. Each of you and all of you. Deanne, Paula,
>Debbie, Jim and I have some ideas about how to raise some money. We are
>sending letters to all of the pharmaceutical companies -- we went through
all
>of the surveys, pulled all of the medications that our members are taking;
>DremaÆs daughter, Heather, did an awesome job of matching all of the
>pharmaceuticals with the companies, and got us all of the addressees. So,
>each of them will get a letter from us asking for support. We are going to
>seek funding from NIH, and we are also working with a few other individuals
>who have contacts with various foundations. 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 care-givers, and we have
the
>regular work of the Association which takes a great deal of time and effort
>from our lives and schedules. And we are in the process of planning and
>arranging a conference.
>
>We canÆt do this alone. We need your help. We are asking you to help us
>raise the $40,000 so that this conference is everything we want it to be
for
>you. Some of you may know people who work for various 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 donÆt know
anyone
>with more than this monthÆs 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
>AssociationÆs 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 conference. If 40 people each raise
$1000 --
>weÆre there. If 80 people each raise $500 weÆre 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
>fund raiser -- 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 their
contributions
>to the Association are completely tax deductible.
>
>We are committed to putting on this conference. 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 do for nothing. And
that
>wouldnÆt be a waste, by any means. We would still get people together, we
>would still offer the educational opportunities, and many good things would
>come out of it. But, there would be fewer people who would be able to
attend,
>because the personal cost of the conference would be much higher, and we
would
>not be able to do as much for everyone as we are planning to do. We could
>also ask people to make a decision about attending by a certain date, and
then
>split the cost based on the number of people who will attend. But that,
too,
>would limit the number of people who come based on their ability to finance
>their attendance.
>
>Philosophically, the Association does not want to do that -- that is why we
do
>not have dues. 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 my home, feeding my family
or
>buying my medicines.... 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. And what the conference is going to offer should be available
to
>everyone.
>
>So, we are asking you to help each other get to this conference 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 and hotel. One of
>our members is engaged in this type of fund-raising with her family and in
her
>community, and we will offer you some suggestions along these lines --
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 conference, if they understood its significance for you -- and
>without Uncle SamÆs tax deduction. We will have an article in the next
>newsletter which will offer some of these suggestions.
>
>We do have a deadline -- some time in the spring, we are going to have to
>decide what we have in the bank, and what that is going to allow us to do.
>And what we would have to charge as a conference registration fee to our
>members. So, we need for you to get involved now.
>
>We will assist you in any way we can. If you need a letter from the
>Association which identifies who we are and what we are doing and what the
>conference is about, please let us know, and we will get it for you. We
would
>want to know things like, do you want it addressed to someone in
particular,
>do you want it from an officer or from yourself... so think through what it
is
>that you need from us. We also have brochures which describe TM and what
the
>Association is about -- we can also get some of those out to you. Also, if
>people have internet access, direct them to our web site. The idea here is
>that we are legitimate, we have an important purpose, and the conference
and
>the Association is worthy of their support.
>
>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 donÆt think that asking people for money is easy. It is hard
for
>me. But IÆm engaged in the process of doing just that because the good I
see
>coming out of this conference 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 1000 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 1000 people look big 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, 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 donÆt 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 IÆm being totally straight with you -- it
>may not amount to anything. There are no guarantees in our plans - only
plans
>that we will attempt to carry out with all 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
>isnÆt 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 to
approach --
>but that is where it is most likely going to happen.
>
>Ask for help if you need it from us. Please keep in mind also 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
>donÆt leave them a copy of our brochure. Really -- what I would ask you to
>keep in mind as a good rule of thumb about this -- 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 ôfeel goodö about the Association, even if they tell you, ôno,
IÆm
>not going to help you, go away.ö ThatÆs not easy to pull off either -- 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 all of you. Please own the task of
>raising the money to support this conference. 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!
>
>Sandy Siegel
>