A Q&A with Dr. Al Musella, founder of The Musella Foundation
In 1999, Dr. Musella founded a national organization dedicated to helping brain tumor patients through emotional and financial support, education, advocacy and raising money for brain tumor research. A podiatrist in Hewlett, N.Y., he became committed to this cause after a sister-in-law was diagnosed with a GBM. His father also died from a GBM shortly after the foundation was launched.
Where do the Desert Gray Matters funds go?
One hundred percent of all proceeds go to The Musella Foundation. We’re a New York-based nonprofit that funds brain-tumor research, clinical trials across the country, and various types of support for patients and their families.
What type of support do you offer?
We help match patients with clinical trials, and help them to understand choices that they are offered. We offer a free book, The Brain Tumor Guide for the Newly Diagnosed, which gets them up to speed fast on what they need to know to intelligently manage their disease.
We provide online support groups where patients can meet others going through the same thing. We put on educational conferences for brain tumor patients, and put videos of the lectures online for free. And we offer patient assistance grants of $5,000 per year to help pay for treatments. So far we have given out over $4 million in grants!
What trials are you involved with right now?
We are doing a project called the Brain Tumor Virtual Trial. It is a registry of patients, the treatments they do and the outcome. I presented it at a few big oncology meetings and at an FDA hearing, which helped to get Avastin approved for brain tumors. We fund a lot of research. See the list at https://virtualtrials.com/grants.cfm. We have done 91 projects so far. Some were incredibly successful.
Can you give an example of success?
We funded the early work on vaccines, which is now just coming to fruition. When we did this, the current thinking was immunotherapy couldn't work in the brain, so funding was hard to come by. We primed the pump so they could get enough data to get the big grants needed to get where we are today. We funded research on Tocagen, which is looking to be a major breakthrough. We funded work on Optune when nobody else would, and it is now the standard of care. We funded a lot of pediatric projects that have found new treatments, which are helping patients now, and one project that has the potential for actually being a cure. We will find out in about a year if this works. This could be the biggest breakthrough yet.
Are there any clinical trials going on in Nevada?
No, we have never received a brain tumor research grant application from Nevada. If a doctor and a hospital there have an interest in research and participating in one of our national trials, I have connections with all of the major companies running them. They just have to fill out an application. Our committee has to approve, and it has to be a worthy project.
But funds raised also go to other services for Nevadans, right?
Yes. We gave seven grants ($35,000) through our copayment assistance program to patients in Nevada to help them get their treatments. And in the last year we had 3,500 Nevadans visit our website seeking help, information and support.
How are you doing with your goal to have Musella Foundation fundraising events in every state?
We keep asking for people to help us expand, but the problem we have is most of the people we deal with are overwhelmed with the brain tumor and don’t have the energy and time to put on an event. We are hiring an event promoter for the New Jersey event, and if it works out, we can see if they can get the events in every state. Right now my organization is not registered as a charity in every state—it is expensive and time consuming—but we just told our accounting firm to start the process. That is really the first step, as we need to be registered to have an event.
For more information, visit virtualtrials.com/musella.cfm.