Meet The Charity: LI's Musella Foundation For Brain Tumor Research And Information Q&A

HEWLETT, NY — Local charities are the unsung heroes of our communities. Nonprofit and not-for-profit organizations strive to create lasting change and positively impact the lives of those around them.

Some people start organizations as a way to cope with grief, some see an issue they want to tackle, and some want to bring lasting change. Sometimes, all those reasons apply.

Patch wants to highlight your local charity and connect it with community members who want to help and do good, so that way, more people can benefit. Here is just one of many charities doing terrific work in your community.

What is your name?

Al Musella, DPM

What is the name of your charity?

Musella Foundation For Brain Tumor Research & Information, Inc.

What is your position within your charity?

President

What community is your organization based in?

Hewlett, NY

Link to your website

virtualtrials.org

What is your mission?

The Musella Foundation for Brain Tumor Research & Information, Inc. is a 501(c)(3) nonprofit public charity devoted to empowering brain tumor patients and their families. We provide emotional and financial support, facilitate educational resources, advocate for patients' needs, and strive to raise funds for groundbreaking brain tumor research. Together, we aim to make a difference in the lives of those affected by brain tumors and contribute to the advancement of effective treatments.

What does your charity do to further its mission? Please list examples.

1. The most advanced AI-based patient navigation program to help patients find treatment options.
2. A co-pay assistance program to help patients pay for their treatments.
3. A book - Guide for the newly diagnosed.
4. We fund brain cancer research.
5. We advocate for brain tumor patients in Congress, and with the FDA and Medicare / Medicaid.
6. We publish our own research.
7. Educational materials.

What inspired you to start your charity?

I lost two family members to brain tumors.

How can people help you accomplish your organization's mission or get involved in events?

Biggest need is fundraising. Anyone interested in helping just email me! ([email protected])

What is the most memorable moment you've had since starting your organization?

One of the first patients in our patient navigation program was a 9-year-old boy with the worst type of brain cancer. He failed all available treatments, was bedridden, in constant pain, and had a short time to live. We identified a drug that might be able to help. He couldn't get into the clinical trial because his disease was too advanced. We helped create an expanded access program for the treatment, and this child got access through it. Today, about 4 years later, he is going to school, pain free, playing soccer, riding a bike and having fun. The tumor is almost gone.

What else would you like people to know about your charity?

We are working on many exciting projects to advance the field. One that everyone could help with is we helped write a bill that is in Congress now which will speed up the cure for many serious diseases. But it is disruptive to the current system and has some opposition. We need people to write their representatives to tell them this is important to them. More details on how to do so here. Here in NY, we have Sen Kristen Gillibrand on board as a cosponsor but we do not yet have Sen. Chuck Schumer. We have our representative, Anthony D'Esposito as a cosponsor but need all of the others!

What are your organization's social media pages or handles?

Facebook; Instagram.

Do you help run a charity?

Nominate it here or share this link with someone who does.