PLATINUM2024

BAND OF PARENTS INC

Bound By Hope

aka BoP   |   New York, NY   |  www.bandofparents.org

Mission

Band of Parents is a 501 (c) (3) grassroots, nonprofit organization that funds innovative research and clinical trials for neuroblastoma, helping increase the survival rate for this childhood cancer. We are a support network for the newly diagnosed and their families as they go through treatment. Our goal as parents is to fast track a cure using less toxic, targeted therapies. In the past decade, Band of Parents has expanded its advocacy, funding research in several major cancer centers throughout the United States. Band of Parents has committed more than $10 million to neuroblastoma research.

Notes from the nonprofit

Since our founding in 2007, Band of Parents has raised more than $10 million to fund innovative and life-saving research and clinical trials for neuroblastoma patients.

Ruling year info

2007

Executive Director

Priscilla Ma

Main address

2248 Broadway #1009

New York, NY 10024 USA

Show more contact info

EIN

26-1227872

NTEE code info

Cancer (G30)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Band of Parents is a grassroots, nonprofit organization that funds innovative research and clinical trials for neuroblastoma, helping increase the survival rate for this childhood cancer. We are a support network for the newly diagnosed and their families as they go through treatment. Our goal as parents is to fast track a cure using less toxic, targeted therapies. Band of Parents' mission is to seek projects that have already been examined in the lab and are in need of assistance to rapidly move into a patient population. The sad fact is that due to the high cost of research and the small number of children diagnosed annually, pediatric cancer is severely underfunded by both the pharmaceutical industry and the federal government. Less than 4% of the National Cancer Institute's funding goes to fight pediatric cancer. We support our members through their children's battle with neuroblastoma, and will continue this fight until not a single child is lost to this disease.

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?

Parent Support Group

The Band of Parents offers members a private online group to share information and discuss issues around caring for a child with neuroblastoma.

Population(s) Served
Adults

Band of Parents is funding this ongoing Memorial Sloan Kettering clinical trial to provide this vaccine to children in remission -- making this highly effective treatment part of the front line treatment to keep children in remission longer. Our goal is to prevent relapse of high-risk neuroblastoma patients in first remission after completion of standard of care, using the bivalent vaccine plus beta-glucan. This could prove to be a groundbreaking trial with the potential to change the treatment of neuroblastoma. The results have been outstanding –– and vaccine is now first line therapy for high risk patients.

Population(s) Served

Partner with Montefiore Health Systems to study the prevention of hearing loss affecting children with neuroblastoma, who are being treated with cisplatin chemotherapy. Cisplatin and other platinum-based drugs are highly effective and widely used in the treatment of pediatric tumors, including neuroblastoma. However, about 60 percent of young patients receiving cisplatin therapy suffer hearing loss due to the death of cochlear outer hair cells of the ear. This study aims to reduce hearing loss while maintaining the efficacy of cisplatinum.

Population(s) Served
Non-adult children

Phase I clinical trial for ALK-driven neuroblastoma. Lorlatinib, an investigational drug candidate currently in late stage clinical development for the treatment of lung cancer, may also
prove effective in treating neuroblastoma. In a collaborative effort among several like-minded nonprofits, we helped to fund this International Phase 1 clinical trial that will be available across 14 US hospitals in the NANT consortium, as well as two European sites in the UK and France.

Population(s) Served
Non-adult children

Band of Parents is providing free blood pressure monitors for our members, and helping them save a trip to the hospital by monitoring their children's blood pressure remotely.

Population(s) Served
Non-adult children
Non-adult children

Where we work

Our results

SOURCE: Self-reported by organization

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

Number of children receiving medical services

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

Health

Related Program

Clinical Trial of Bivalent Vaccine for High-Risk Neuroblastoma

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Over 300 pediatric neuroblastoma patients were enrolled in a ground-breaking vaccine trial to help keep them in remission longer. The results show an improvement to overall survival rate.

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.

Our goal is to find a cure for neuroblastoma, while reducing the highly toxic nature of treatment -- which in itself can lead to death or permanent disability, such as cognitive and hearing deficits.

The goal and the mission of the Band of Parents is to cure neuroblastoma and to get drugs or therapies into the clinic as soon as possible. Rather than funding initial research, our goal is to take what has already come out of the test tube and get it into the clinic, so children can be saved and made healthier as fast as possible.

Since the Band of Parents was founded in 2007, we have raised more than $10 million dollars for neuroblastoma research. We have funded two lifesaving treatments that are now front line protocol at Memorial Sloan Kettering Cancer Center: Hu3f8 (humanized antibody) and the neuroblastoma vaccine. Today, we are funding research on a more effective antibody so that someday antibodies can replace chemotherapy, which has such deadly effect. Antibodies have no long term side effect that we know of today. They help your body learn to fight the cancer itself. We fund the most promising clinical trials at major cancer centers worldwide, including Memorial Sloan Kettering, Children's Hospital of Los Angeles, Children's Hospital of Philadelphia, and hospitals in Europe.

When Band of Parents began in 2007, treatment options for neuroblastoma were limited, and survival rates daunting. Today, thanks to research we have funded, the clinical landscape has profoundly changed. Our funding and support of Hu3F8 and vaccine has helped push survival rates to above 50%, (closer to 70% at major cancer centers like Sloan Kettering). Hu3F8 was FDA approved in late 2020, which means distribution will expand and more patients can receive this life-saving treatment.

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 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 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 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 people’s interactions with us (e.g., site, frequency of service, etc.), We act on the feedback we receive

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback

Financials

BAND OF PARENTS INC
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Operations

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

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

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  • 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.

BAND OF PARENTS INC

Board of directors
as of 01/24/2024
SOURCE: Self-reported by organization
Board chair

Mr. Marc Winthrop

Oxis Capital

Caryn Franca

Marc Winthrop

Kenneth Lynch

Jill Ostrager-Cohen

Mark Unger

Adnan Siddiqi

Francesca Demers

Jenn Wolf

Vanessa Forte-Abbadessa

Abby Brody

Gregory Sizikov

Amiee Mittleman

Misty Rohaly

Emily Goebel

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 1/24/2024

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
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 01/19/2023

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 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.
Policies and processes
  • 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.