FYI Team NZ
----- Original Message -----
From: <musella@...>
To: <danzac@...>
Sent: Monday, December 03, 2007 5:25 PM
Subject: Brain Tumor News Blast - Annual Fundraing Plea!


Dear Friend:

It’s time for our annual fundraising appeal! I know I don’t have to tell
you how bad brain tumors are, or how important our online resources are to
anyone searching for information, but I do want to tell you about some of
the things we did this year and some of our future plans, as well as how you
can help!

We had another major advocacy win this year. We were the only organization
to notice that Medicare neglected to include payment for Gliadel (the wafers
implanted into the brain when a tumor is removed – which slowly release
chemotherapy) in their massive proposed overhaul of the payment system.
Having Medicare remove payment would mean loss of access to this potentially
life saving treatment (it reduces the risk of dying over 3-4 years by 27% in
patients with high-grade malignant gliomas), as the hospitals wouldn’t even
be allowed to charge you for it. You just wouldn’t be able to get it. I
organized a letter writing campaign and had a meeting with Medicare. I was
the only patient representative to show up. Medicare reversed the decision
and now pays for Gliadel again!


The next crisis that we are working on is how to pay for the expensive new
treatments being tested, such as Avastin and CPT-11, which now costs up to
$600,000 per year. We are also working on trying to figure out what the
optimal length of time is to be on Temodar after radiation (and it probably
isn’t the standard 6 months).


We get many requests for brain tumor research grants. It is so frustrating
not to be able to fund all of the excellent projects. We pick a few projects
which we believe will make the biggest impact with the limited resources
that we have. Our main goal is to fund innovative projects at an early
stage, up to the point where they are shown to work well enough to get big
funding elsewhere. Surprisingly, a researcher with a bold new idea has a
great deal of trouble getting a grant from government sources. Although the
government now spends a lot of money on brain tumor research, most of it is
tied up in a few long term projects at major centers, leaving almost nothing
for other researchers with new ideas.

The largest grant we ever gave was $250,000 to Dr Black and Dr Yu at Cedars
Sinai to develop a new form of their vaccine therapy to target inoperable
tumors. They already had a promising vaccine which required surgery to get a
sample of the tumor, but many of the people we sent to them were not
eligible for it, so I asked them to develop a way to use it on inoperable
tumors – starting with diffuse brainstem gliomas. Once they developed the
vaccine, they were able to secure funding to run the clinical trial, and
that trial is now underway! If it works, it should be easy to adjust it to
any type of brain tumor.

Another of my pet projects is the microbeam radiation project being done at
Brookhaven National Lab by Dr Dilmanian. This is a new form of radiation
that potentially may work better and have fewer side effects, and as such
may be able to be used over and over again if the tumor recurs. This is
especially important in children, whose brains are more sensitive to
radiation. This is in an early stage, currently working on rats only. The
process involves many small experiments figuring out how best to administer
the radiation and to build up enough data to support winning a large NIH
grant to complete the development. We didn’t have enough money to fund it
ourselves, so I asked other brain tumor organizations to join with me to
fund them together. With the help of Lauren’s First and Goal Foundation and
the Have a Chance Foundation, we funded a few experiments. I am now trying
to raise money to fund a few more. We need to raise money quickly to keep
the experiments going and keep the researcher focused on brain tumors.


We are negotiating right now to test an alternative treatment called Ruta-6.
This is the most popular – and perhaps the most promising – alternative
treatment for brain tumors, yet we have no scientific data on it. I would
like to see a study in rats – testing not only IF Ruta-6 works, but if the
supply that is sold in the USA works as well as that obtained from India.


I have many other exciting proposals sitting on my desk, just waiting for
funding. Any of which might lead to a breakthrough. It is a shame that the
lack of a relatively small amount of money is slowing down the process.

We are also planning on adding a few exciting features to our website,
Clinical Trials and Noteworthy Treatments For Brain Tumors, at
virtualtrials.com. We already had over 22 million page views on the website
this year alone – which demonstrates its importance to the brain tumor
community.

I would like to request your help in raising money to allow us to continue
working toward speeding up the cure and helping families deal with brain
tumors. Your donation will quickly be put to good use and WILL make a
difference. Mark it “for brain tumor research only”, and I promise that
100% of your donation will go to fund a research project. Otherwise, it can
also be used for creating educational materials and conferences. Our
organizations’ fixed expenses are already covered by our generous website
sponsors.


I would like to ask you to donate $100, $500, $1,000 or more (although any
amount would be greatly appreciated), AND to ask your friends, family and
employer to match it. Or consider other ways of giving – such as
donating appreciated stocks or property (which can be more advantageous to
you tax wise), by remembering us in your will, naming us for memorial
donations or by having a fund raiser for us.

We are a 501(c)(3) non-profit public charity in the USA, so your
contributions are tax deductible to the full extent of the law. Feel free
to call or email if you have any questions or suggestions.

To donate online by credit card, go to
http://virtualtrials.com/donate
or send a check made out to `Musella Foundation` to the address below!

Sincerely,

Al Musella, DPM
President
Musella Foundation
1100 Peninsula Blvd
Hewlett, NY 11557
888-295-4740
virtualtrials.com