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Musella Foundation For Brain Tumor Research & Information, Inc 2012 Highlights

Al's Comment:

Highlights of our work over the year!  There is still time to make a tax deductible contribution for 2012!


Posted on: 12/30/2012

Musella Foundation For Brain Tumor Research & Information, Inc

2012 Highlights

 

Research Grants: We funded six exciting research projects so far  this year. You can read about them at virtualtrials.com/grants.cfm  These grants cover research into many types of tumors: Glioblastoma multiforme, brainstem glioma, low grade glioma, and oligodendrogliomas - in adults and children!

We have an excellent track record on picking the research projects which will make the biggest impact.  We helped fund research that led to all three of the most promising treatments in the pipeline.   We gave the first grant to get the ICT-107 vaccine started – a recent publication on early results acknowledged our funding!  They reported amazing results with GBM patients: a three year survival rate of 55%, compared to 16% of the historical controls, with 38% of the patients still disease free at the end of 3 years, compared to 6% of the historical controls.

The Musella Foundation was started because of a relative with a GBM.  Not only did she want us to find the cure, she wanted it to be something that wouldn’t hurt and make her feel sick all of the time.  This was a major step toward that wish – as this vaccine is a simple shot in the arm or leg – similar to a flu shot, with very minimal side effects!

 

Patient Advocacy: Last year’s major advocacy event was the FDA meeting to consider the approval of the Novocure NovoTTF-100A device for the treatment of recurrent Glioblastoma Multiforme.  Dr. Al Musella – President of the Foundation – testified as a patient advocate at the meeting and helped get the approval.  It should be noted, only one other brain tumor organization participated in the event.  This new treatment modality is now available to patients!
 The next battle we are fighting is to get earlier access to the most promising treatments. For example, with the  ICT-107 vaccine mentioned above – there is currently no way for any GBM patients to get it. One trial has been completed and we are waiting for the next trial to begin.  And even when the new trial is running, only a small number of patients can get the vaccine. In the mean time, people are dying every day.  We are working on a way to get this and other promising treatments in the pipeline available to everyone sooner than the current laws allow.

 

Patient Education and Services:

We just released a new 71 page edition of  our “Brain Tumor Guide for the Newly Diagnosed”. It is available for free as an ebook on our website, or can be purchased via amazon.com.  It is a must read for anyone battling brain tumors. One of the major changes was to emphasize the need to consider clinical trials BEFORE that first surgery.  There are clinical trials – like DC-VAX – which require you enter before the first surgery or you can not get access to it. 

We launched our patient copayment assistance program. As far as we know, we are the only brain tumor organization allowed to help patients with their Medicare co-payments. We have already awarded over $500,000 in assistance to patients in less than a year! Patients are telling us this program is a life saver – as many could not afford to pick up their Temodar and were going to start radiation without Temodar.  We were able to approve requests the same day in such emergency situations.  Using Temodar at the same time as radiation increases the 2-year survival to 27% vs. 10% without it and this program allowed many patients to get access in time!

 

Website and online support groups:  We have been continuously updating our “Clinical Trials and Noteworthy Treatments For Brain Tumors” website and it now has the most (and best) brain tumor educational videos available – free to everyone.  We also have an outstanding array of articles, guides, databases, online support groups and continue to run our “brain tumor virtual trial”, which is a registry of brain tumor patients, the treatments they do and their outcomes.  One cool addition to the website is a new way to list clinical trials by the number of participating centers.  This lets you quickly identify the “major” trials of the 180+ trials we have listed.  

 

Please consider making a tax deductible donation before the new year - to help us continue our mission of improving the lives of families dealing with brain tumors!  Just go to  http://virtualtrials.com/donate and your donation will count for 2012 if received before Midnight monday night, Dec 31 (Eastern Time)!

 


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