The Musella Foundaton For Brain Tumor Research & Information, Inc, a 501(C)3 nonprofit public charity dedicated to helping brain tumor patients through emotional and financial support, education, advocacy and raising money for brain tumor research.
Some highlights of our accomplishments:
Copayment Assistance Program - We have awarded over $1 million in direct patient assistance to help patients get the treatment they need!
Clinical Trials & Noteworthy Treatments For Brain Tumors
This 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 it's own domain name, virtualtrials.com, 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.com and not virtualtrials.org - since it is now run as a non-profit. It actually has both addresses. Virtualtrials.com 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 helped get Avastin approved for brain tumors
And most recently, Dr Musella organized and represented the brain tumor community at the FDA hearing to help get the Novocure TTF-100A device approved!