Some highlights of our accomplishments:
We have awarded over $7.25 million (as of July 2020) in direct patient assistance to help patients get the treatment they need!
Clinical Trials & Noteworthy Treatments For Brain TumorsThis website. It all started as the first online support group dedicated to brain tumors, on Compuserves, in January 1993. A companion website was created later that year - hosted under Rand Hove's company website. It later moved to its own domain name, virtualtrials.org, in 1996, where it became one of the premier sources of information for brain tumor information, as well as hosting many online support groups, chat rooms, newsletters, articles, and the database of clinical trials. We were the first to offer free video of brain tumor conferences and now have a huge multimedia library on topics important for brain tumor patients. Al Musella ran it all as a volunteer for the first 5 years, then when it became overwhelming, timewise, for him, the Musella Foundation was formed in 1998 and he became a part time employee of the foundation and gave up 2 of his 3 medical offices to allow more time to dedicate to brain tumors. He is currently the only employee, but is backed by many volunteers. The office of the foundation is currently run out of his medical office in Hewlett, NY. As a side note - we are often asked why the site is virtualtrials.org and not virtualtrials.org - since it is now run as a non-profit. It actually has both addresses. virtualtrials.org is more popular because it was in use and widely known for years before the IRS granted us non-profit status, and there were already many links to the .com version, so we kept the .com name.
Brain Tumor Virtual Trial This is a study of brain tumor patients, what treatments they had and the outcomes. Our hope is to identify combinations of treatments that may work better (either longer survival times, or higher quality of life) than currently used treatments. When we find combinations that look promising, our medical advisory board will test them in standard clinical trials. An offshoot of this is the Long Term GBM Outcome Project, which will try to form a large database of the long term survivors and try to figure out why they are beating this when many don't.
We have raised money for brain tumor research and have given grants for some of the most important brain tumor research projects.
We have run a few letter writing campaigns which had major impacts on the lives of brain tumor patients.
We helped speed up the approval for Temodar.
We helped convince Medicare to pay for Temodar.
We convinced Medicare to pay for Gliadel.
We are currently trying to get a bill passed that will greatly speed up the search for the cure and give brain tumor patients more treatment options quickly!
The Remarkable Story of virtualtrials.org
- published in Brain Tumour - World Edition
Al Musella, DPM is a retired podiatrist. He worked his way through school as a computer programmer for medical research projects.
His interest in brain tumors started when his sister-in-law, Lana, was diagnosed with a GBM in 1992, and was told it was hopeless. After surgery and radiation, the tumor was larger than before the surgery and she was told she only had a few weeks left to live and there was no treatment options for her other than a standard course of BCNU, which had no chance to help her for more than a few extra weeks.
At that time, there was no world wide web! Version 1 of Netscape was released on December 15, 1994. Al was an active member of Compuserve, and Compuserve had a cancer forum, with sections devoted to the top 10 cancers (and no brain tumor section). Al created and ran the Brain Tumor Forum on Compuserve in January 1993. He organized the members and had them help survey every major hospital in the USA to find what treatments were available. That list was posted on Compuserve and became the basis for the first internet database of clinical trials! At that time, the NCI only maintained lists of clinical trials that they funded, not the trials sponsored by the drug companies or the individual doctors or hospitals. (They do most now). And the only way to access them was to call the NCI and they would mail them to you. The NCI invited Al to demonstrate his technology to them, and the clinicaltrials.gov website was partially modelled after virtualtrials.org!
Al found a few clinical trials that would accept Lana, after being told by a few major brain tumor centers that there were none. She did very well for a while, getting to see her 4 kids grow up, then unfortunately died of a recurrence on Oct 25, 2000. She lived over 8 years after being told she only had a few weeks left. Many of those years were in excellent condition, with her taking care of her kids, working, driving and enjoying life.
Ironically, Al's father was diagnosed with a GBM in 1999, a year after Al formed the Musella Foundation. He died quickly, in about 4 months.
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