PLATINUM2024

Glioblastoma Foundation Inc

Transforming Glioblastoma Therapy

Mission

The Glioblastoma Foundation is the first and leading national nonprofit devoted to Glioblastoma. We fund leading edge research for new treatments for Glioblastoma. Our mission is to transform the standard of care for glioblastoma, and we are the leading national funder of high-impact research for new, more effective treatments for glioblastoma. We also provide resources for patients after a glioblastoma diagnosis like clinical trials matching, access to the best second opinions, and a professionally-led support group for patients and caregivers. We also work to raise awareness of Glioblastoma through our nationally recognized programs such as our Rock Against Glioblastoma Music Festival.

Ruling year info

2016

Board Chair

Madan Kwatra

Main address

2451 Croasdaile Farm Parkway Suite 109

DURHAM, NC 27705 USA

Show more contact info

EIN

81-2849764

NTEE code info

Fund Raising and/or Fund Distribution (G12)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Focused Ultrasound

MRI guided focused ultrasound is a novel, non-invasive, FDA-approved technology with potential use for treatment of difficult to reach glioblastomas in subcortical regions. The goal of this research is to study the effectiveness of this technology by evaluating tumor response after treatment. The research is intended to determine the efficacy of MRI guided ultrasound for the treatment of tumors in subcortical areas not easily removed through surgery.
Weill-Cornell Medical Center
PI: Dr. Rohan Ramakrishna, MD

Population(s) Served
People with diseases and illnesses

Mebendazole for the treatment of glioblastoma; refinement of the anti-parasitic agent as a treatment for glioblastoma.
Johns Hopkins Medical Center
PI: Dr. Gregory Riggins, MD, PhD

Population(s) Served
People with diseases and illnesses

Where we work

Affiliations & memberships

The Personalized Medicine Coalition 2023

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Average grant amount

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Our average grant amount is $100,000.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The Glioblastoma Foundation is the first and leading national nonprofit devoted to Glioblastoma. Our mission is to transform the standard of care for glioblastoma. We fund leading edge research for new treatments for Glioblastoma, because the current standard of care for Glioblastoma falls short. We are the leading national funder of high-impact research for new, more effective treatments for glioblastoma. We also provide resources for patients after a glioblastoma diagnosis like clinical trials matching, access to the best second opinions, and a professionally-led support group for patients and caregivers. We also work to raise awareness of Glioblastoma through our nationally recognized programs such as our Rock Against Glioblastoma Music Festival.

Our research focus is on targeted treatments for Glioblastoma, including drug repurposing, early detection, focused ultrasound, and the development of efficient pre-clinical drug development models.

Our goal is to cure glioblastoma with targeted treatments, based on the cellular characteristics of a patient's tumor.

Our research focus is on targeted treatments, based on the characteristics of a patient's tumor. We aim to revolutionize treatment for Glioblastoma by funding the development of pre-clinical models to aid in treatment, supporting the development of new and re-purposed drugs for Glioblastoma, support for focused ultrasound and other new techniques to improve patient outcomes, and enable early detection to improve survival.

Our team has extensive scientific knowledge and strong background in Glioblastoma research. From drug development to FDA approval, we have the expertise to fund the development of new and more effective treatments taking promising therapies from bench to bedside.

At the Glioblastoma Foundation we are leaders in identifying and funding the most promising new treatments for Glioblastoma. This includes funding already given toward the development of the following drugs for Glioblastoma:
Mebendazole, Osimertinib, HSP-90 inhibitors, development of generic Lomustine, which has shown promise in prolonging survival for Glioblastoma patients, among others.

We have funded glioblastoma drug development research at leading medical centers including Johns Hopkins, Harvard, Columbia University, University of Pennsylvania, MD Anderson, Wake Forest University, UT Southwestern, Weill-Cornell Medical Center, and many others.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

Glioblastoma Foundation Inc
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Operations

The people, governance practices, and partners that make the organization tick.

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lock

Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Glioblastoma Foundation Inc

Board of directors
as of 02/18/2024
SOURCE: Self-reported by organization
Board chair

Madan Kwatra

Glioblastoma Foundation Inc

Term: 2016 -

Madan Kwatra

PhD

Steven Castillo

PhD

Pamela Bolt

FDA/CMC

Sallie Krewer

Advocacy

Gita Kwatra

PharmD, MBA

Cameron West

MD

Kathyn Becker

MD, PhD

Meghan Goulet

PsyD, MS

Callie Roberts

MD

Arti Rai

JD

Paula Paula Trzepacz

MD

Neelam Kwatra

MA

Erin O'Reilly

PhD

Bridget Ketron

BA

Julia Villegas

BA

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 2/18/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
Asian/Asian American
Gender identity
Male, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

Equity strategies

Last updated: 02/18/2024

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.