irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $244KTHE ORGANIZATION RUNS A COPAYMENT ASSISTANCE PROGRAM FOR MALIGNANT BRAIN TUMOR PATIENTS WHO HAVE INSURANCE, MEET CERTAIN ELIGIBILITY REQUIREMENTS, AND NEED HELP PAYING FOR TREATMENTS. THE ORGANIZATION IS ALSO PERMITTED TO EXPEND A SPECIFIED AMOUNT OF THE PROGRAM FUNDS FOR MANAGEMENT AND GENERAL RELATED TO ADMINISTERING THE PROGRAM PURSUANT TO THE CONTRACT.
named programs · 2 · from sources
What they call their work
Brain Tumor Symptoms and Diagnosis Resource
Educational initiative based on patient survey data describing common symptoms, diagnostic delays, and patient experiences
Copayment Assistance Program
Provides financial aid to malignant brain tumor patients with insurance to help cover treatment-related costs
activities · 7 groups
What they do
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Pharmacy Access and Medication Assistance 1 activity
- Administers financial assistance programs for brain tumor treatment costsOperates a copayment assistance program for insured brain tumor patients to help cover costs for treatments including Optune, Avastin, Gliadel, and Temodar; the program is currently closed to new applicants but continues to serve existing recipients. Also provides a drug discount card for uninsured individuals to reduce prescription costs and offers targeted financial aid to help patients access gallium maltolate for recurrent glioblastoma.
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Cancer Awareness and Education Initiatives 1 activity
- Advocates for brain tumor policy and awareness initiativesAdvocates for legislative action such as The Promising Pathway Act to accelerate access to brain tumor treatments and participates in national awareness and fundraising events like the National Walk To End Brain Tumors.
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Medical Research & Education Dissemination 1 activity
- Distributes educational materials to individuals and organizationsProvides and distributes copies of brain tumor educational materials to individuals, support groups, and medical facilities, with quantity limits based on recipient type.
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Disease-Specific Clinical & Patient Education 1 activity
- Operates patient support services for brain tumor patients and familiesProvides free access to educational resources including a video library of expert talks, a downloadable guide for newly diagnosed patients, plain-language treatment explanations, and an email newsletter (Brain Tumor News Blast) to share updates. Also offers a toll-free patient help line and hosts webinars on emerging therapies such as combination treatment for DIPG/DMG.
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Recreational and Emotional Support Programs for Children with Serious Illnesses 1 activity
- Organizes supportive programs for children and teens affected by brain tumorsHosts Camp Jinka, a free camp for children and teens who have been impacted by brain tumors in their families, providing psychosocial support and community building.
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Healthcare Provider Directories and Clinical Support Services 1 activity
- Runs virtual trial and treatment-matching programOperates the Virtual Trial program to connect brain tumor patients with appropriate treatments and clinical trials. Collaborates with platforms like xCures and Cancer Commons to analyze patient data and expand access to personalized treatment pathways.
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Uncategorized 1 activity
- Conducts and supports brain tumor research initiativesConducts patient surveys to collect data on symptoms, diagnosis experiences, and treatment outcomes, including a survey of 4,028 patients. Develops AI-powered tools like xINFORM to generate personalized treatment options and summarizes key findings from major oncology conferences (ASCO, SNO). Provided funding support for ONC-201 research that showed doubled survival in H3K27M-mutated DMG patients.
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financials · form 990 · fy2024
revenue
Total revenue$475K
Contributions & grants$339K71%
Program service revenue$00%
Investment income$136K29%
Other revenue$0
expenses
Total expenses$718K
Program expenses87%
Admin / overhead11%
Fundraising2%
Salaries & benefits$276K
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$2.06M
Cash$1.27M
Investments$789K
Liabilities$15K
Net assets$2.04M
Liquid reserves34.3 mo
4 years on record · 2020–2024 · YoY revenue -60.8%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| ALBERT MUSELLA DPM | PRESIDENT | 37 | $228K |
relationships · 26
Who they work with
- American Society Clinical Oncology Network — Reviews and highlights research presented at the American Society of Clinical Oncology annual conference.
- Cancer Commons Partner — Collaborates with the Musella Foundation to analyze patient data from the Virtual Trial project.
- Caris Life Sciences Partner — Referred for tumor genetic testing services.
- Chimerix Partner — Announced positive ONC201 data in recurrent H3K27M-mutant diffuse midline glioma, with the Musella Foundation reporting on the results.
- Diakonos Partner — Works with Diakonos to support case-by-case expanded access to DOC1021 dendritic cell therapy for glioblastoma.
- Donate for Charity Partner — Partners with Donate for Charity to facilitate vehicle donations, enabling donors to contribute cars to support the foundation's mission.
- End Brain Cancer Initiative Partner — Partner organization providing patient support resources.
- Facebook Network — Member of Facebook network for outreach and engagement.
- Facebook Partner — Has a presence on Facebook to share information about brain tumors and treatments.
- Foundation Medicine Partner — Referred for tumor genetic testing services.
- Head for the Cure Foundation Partner — Collaborates with the Head for the Cure Foundation on the Path to Relief Fund, which provides financial assistance to individuals with primary malignant brain tumors.
- Jazz Pharmaceuticals Partner — Partner organization responsible for commercialization and patient assistance programs for Modeyso™ (formerly ONC201).
- NCI Government — Collaborated with the NCI, which invited Al Musella to demonstrate his clinical trials database technology, influencing the development of clinicaltrials.gov.
- National Walk To End Brain Tumors Partner — Partners with the National Walk To End Brain Tumors to raise funds for brain tumor research through nationwide 5k runs and walks.
- Novocure Partner — Company that sponsors the organization and develops the Optune™ device for brain tumor treatment.
- Nuvox Therapeutics Partner — Collaborates to facilitate single-patient expanded access to NanO2 therapy for newly diagnosed glioblastoma.
- Oncoceutics Partner — Presented research on ONC-201 to the FDA, with involvement supported by the Musella Foundation.
- Our Brain Bank Partner — Hosts and shares the "Glioblastoma Bill Of Rights" content originally published by Our Brain Bank.
- Rznomics Partner — Partners to enable access to RZ-001 for recurrent glioblastoma through expanded access pathways.
- Society Of Neuro-Oncology Network — References and summarizes research from the Society of Neuro-Oncology annual conferences.
- Society for Neuro-Oncology Network — Professional society where data on ONC-201 was presented.
- Store My Tumor Partner — Referred for flash-freezing and preservation of tumor tissue.
- Twitter Network — Member of Twitter network for outreach and engagement.
- Twitter Partner — Has a presence on Twitter to share information about brain tumors and treatments.
- xCures Partner — Collaborates with the Musella Foundation to analyze patient data from the Virtual Trial project.
- xCures, Inc Partner — Collaborated with the Musella Foundation on the development of xINFORM, a personalized treatment options software for brain tumor patients.
strategies · 3
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Free Access Model with Editorial Independencemethodology: free-access_model_funded_by_sponsorshipsBy offering all services free of charge and funding operations through sponsorships—while enforcing strict editorial independence—the foundation maximizes accessibility to critical information without compromising content integrity, because removing financial and informational barriers increases reach and trust among patients.
- Patient Empowerment Through Accessible Educationmethodology: patient_education_modelBy translating complex medical information into plain language and centralizing expert resources, the foundation enables informed decision-making among patients, because accessible knowledge builds patient agency and engagement in treatment planning.
- Patient-Powered Research and Information Disseminationmethodology: patient_powered_researchBy leveraging patient-powered crowdsourcing and patient-reported outcomes, the foundation collects real-world data on treatment experiences and diagnostic journeys, which it disseminates to expand access to experimental therapies and underrepresented clinical knowledge, because collective patient experience generates actionable insights faster than traditional research alone.