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Clinical Trials And Noteworthy Treatment For Brain Tumors


Issue #60 9/3/2003

  1. I posted new videos (Go to virtualtrials.com and click on INTERACT then VIDEO LIBRARY) of the Cleveland Clinic Foundation Family Health Talk on Brain Tumors.
    Topics are:
    • Introduction (to brain tumors)
    • Laboratory and clinical research
    • Advances in surgery for brain tumors
    • Radiation options for brain tumor patients
    • Chemotherapy / targeted drugs

    I am working on another one which will be posted shortly: Role of the brain tumor nurse, social support and local and national resources available to patient.

    These videos are the best quality we ever had! I used the latest version of the Real Video tools. It makes a big difference in video quality, but it does require that you upgrade to the latest version of the real video player. If the video doesn't play for you, go to real.com and look for the link to the FREE real one player. (Right now it is on the upper right corner of the page - but they move it around to hide it to make people think there is no free version available!) Install it, then go back and view our videos!
    Of course, they work best with a high speed internet connection. If you have a slow connection, consider going to a friend's house or your local library that has a higher speed connection. I made 3 versions of each video:

    • High speed video: this has a large video window, slides, and stereo audio.
    • Low speed video: this has a tiny video window, slides and mono audio.
    • Lower speed Audio only (no video): it has the slides and mono audio. Instead of video of the speaker, there is a static picture of the speaker.

    This newsletter goes out to over 2,500 people, so if everyone views the videos right now, the site might slow down. IF it looks too slow, try again late at night or early morning.
    IF the videos don't work for your computer, you can request a copy on CD. The CD version will still require the latest version of REAL player.
    As with all of our services, we do not charge for the videos, but if you find them (or our other services) worthwhile - please consider making a donation to help support us. Also let me know how you like the content of the videos - are they too easy - too hard - just right? We have a few more videos in the pipeline.. One set is much more technical; one is about the same level as these. Let me know which you would prefer to see first.

  2. I am considering forming an association of small brain tumor foundations, with the purpose of pooling resources to enable us to give out larger grants for brain tumor research, with much less paperwork, and a much quicker approval time. If you run (or know of) a small brain tumor foundations - contact me for details. The idea is to cut down the paperwork burden on the researchers, and hopefully approve (or deny) grant requests within a week or 2, instead of the usual 6-12 months most government grants take. We would also allow the public to direct donations to our research fund, where 100% of the donation will go to brain tumor research, and usually pretty quickly - so it will make an immediate difference.
    The reason I came up with this idea is that I get approached with grant requests on a regular basis - most of which are good projects, but I don't have the funds to give to them all, so most get denied. One recent grant request bothered me. It was for a very exciting project, which was stalled at the point of starting a trial, due to the lack of about $50,000. I didn't have enough money for it, so I had to deny it. They will eventually get the money and start the trial, but we could have cut at least 6 months off of the process. IF this one happens to be the cure - and although that is a long shot, to me it is one of the more promising new treatments in the pipeline - that means over 10,000 people died needlessly due to the lack of a little money.

  3. We are getting ready to do a survey of the visitors to the website. I am open to suggestions for which questions you may want to ask. Reply to this message with ideas for questions to ask in the survey!

  4. A word about viruses: I am getting inundated with these new viruses. When these viruses infect a computer, they search the hard drives for anything that looks like email addresses. It then sends out email with the virus to all of those addresses, but also fakes the return address as one of the other email addresses it finds on the computer. I have been getting over 2,000 of these a day for the last few weeks, so I have been bulk deleting a lot of mail. If you send me email and didn't get a reply, send it again. Use a subject that stands out, like PRIVATE RE: Brain Tumors. NEVER use a blank subject or the words: HI or HELLO. Those get deleted automatically now.
    The only protection against it is to make sure you use an antivirus program, and update it regularly. Every time you update the virus program, (which should be daily) scan your entire computer, because viruses could have snuck in that weren't caught by the old version of the scanner.
    One bad side effect of this virus is a lot of people are getting subscribed and unsubscribed to mailing lists and newsletters, since the subscribe and unsubscribe addresses are usually on the computer, and can be forged. For all of our services, we send an email confirming subscriptions and unsubscriptions - so if you get one that you didn't authorize, let me know that it was an error and that I should add or remove you from whatever list. We are always told to never respond to spam, but this is different. If you do not want this newsletter, reply to it and tell me to remove you and I will.


Al Musella, DPM
President
Musella Foundation
Brain Tumor Research & Information
www.virtualtrials.com
516-295-4740



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