PLATINUM2023

BAND OF PARENTS INC

Bound By Hope

aka BoP   |   New York, NY   |  www.bandofparents.org
GuideStar Charity Check

BAND OF PARENTS INC

EIN: 26-1227872


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.

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

Subject area info

Cancers

Population served info

Children and youth

Adults

Parents

Non-adult children

NTEE code info

Cancer (G30)

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
Non-adult children

The 3F8 antibody has shown amazing success in eradicating high-risk chemo-resistant neuroblastoma infiltrating the bone marrow. Still, about 20% of those diagnosed with this deadly cancer never reach remission, and many of those in remission see their cancer return. Because 3F8 is made from mouse antibodies, many children develop immunity to it, making further 3F8 treatment ineffective. For those who form immunity too soon, the problem is huge—their disease is likely to return or progress. This lead to the development of a “humanized” 3F8 antibody (Hu3F8). Hu3F8 entered the clinic in August 2011 as a phase one clinical trial – fully funded by the Band of Parents. Today, this therapy has become a vital part of saving more precious lives. Hu3F8 is our greatest accomplishment to date; Hu3F8 is now being used to treat children every week at MSKCC and was FDA-approved in November 2020, making it more widely available.

Population(s) Served
Non-adult children

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

Phase 1 study at Children's Hospital of Philadelphia, with an innovative combination drug therapies for improving high-risk neuroblastoma survival. The trial matches genomic aberrations in neuroblastoma cells at the time of relapse to special combinations of molecularly targeted agents that have shown success in
preclinical models. The team biopsies tumors in eligible patients with relapsed or primary refractory neuroblastoma. Tumor DNA and RNA are processed to identify protocol-specified biomarkers for targeted therapy.

Population(s) Served
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

Phase 5 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.)

  • 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
Fiscal year: Jan 01 - Dec 31
Financial documents
2021 Band of Parents FYE 2021 Audited Financials 2019 Band of Parents Inc 2018 Audited Financials 2016
done  Yes, financials were audited by an independent accountant. info

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2021 info

SOURCE: IRS Form 990

84.99

Average of 45.12 over 10 years

Months of cash in 2021 info

SOURCE: IRS Form 990

3.6

Average of 11.1 over 10 years

Fringe rate in 2021 info

SOURCE: IRS Form 990

9%

Average of 1% over 10 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

BAND OF PARENTS INC

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

BAND OF PARENTS INC

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

BAND OF PARENTS INC

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of BAND OF PARENTS INC’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

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Business model indicators

Profitability info 2017 2018 2019 2020 2021
Unrestricted surplus (deficit) before depreciation $449,495 -$42,643 -$29,476 -$95,825 -$106,507
As % of expenses 78.2% -5.9% -3.2% -9.1% -10.1%
Unrestricted surplus (deficit) after depreciation $449,365 -$42,773 -$29,650 -$96,036 -$106,718
As % of expenses 78.1% -5.9% -3.2% -9.1% -10.1%
Revenue composition info
Total revenue (unrestricted & restricted) $1,051,148 $624,462 $884,213 $926,630 $950,075
Total revenue, % change over prior year 34.3% -40.6% 41.6% 4.8% 2.5%
Program services revenue 0.0% 0.0% 0.0% 0.0% 0.0%
Membership dues 0.0% 0.0% 0.0% 0.0% 0.0%
Investment income 0.3% 2.3% 1.8% 1.4% 0.6%
Government grants 0.0% 0.0% 0.0% 0.0% 0.0%
All other grants and contributions 99.6% 97.6% 98.2% 98.1% 96.7%
Other revenue 0.0% 0.0% 0.0% 0.5% 2.7%
Expense composition info
Total expenses before depreciation $574,962 $724,129 $925,007 $1,056,463 $1,053,996
Total expenses, % change over prior year -21.8% 25.9% 27.7% 14.2% -0.2%
Personnel 1.0% 0.8% 0.0% 12.8% 17.6%
Professional fees 40.9% 33.1% 12.4% 3.8% 1.7%
Occupancy 0.0% 0.0% 0.0% 0.0% 0.0%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 52.5% 62.3% 85.2% 79.8% 76.4%
All other expenses 5.6% 3.8% 2.4% 3.7% 4.3%
Full cost components (estimated) info 2017 2018 2019 2020 2021
Total expenses (after depreciation) $575,092 $724,259 $925,181 $1,056,674 $1,054,207
One month of savings $47,914 $60,344 $77,084 $88,039 $87,833
Debt principal payment $0 $0 $0 $0 $0
Fixed asset additions $0 $0 $813 $0 $0
Total full costs (estimated) $623,006 $784,603 $1,003,078 $1,144,713 $1,142,040

Capital structure indicators

Liquidity info 2017 2018 2019 2020 2021
Months of cash 22.9 16.0 5.2 2.4 3.6
Months of cash and investments 22.9 16.0 12.3 9.0 7.4
Months of estimated liquid unrestricted net assets 20.4 15.5 11.7 9.2 8.0
Balance sheet composition info 2017 2018 2019 2020 2021
Cash $1,096,164 $964,220 $404,361 $211,702 $312,489
Investments $0 $0 $546,270 $584,391 $333,447
Receivables $0 $0 $0 $8,406 $52,500
Gross land, buildings, equipment (LBE) $649 $649 $1,055 $1,055 $1,055
Accumulated depreciation (as a % of LBE) 37.6% 57.6% 13.4% 33.4% 53.4%
Liabilities (as a % of assets) 5.6% 3.9% 5.7% 0.9% 1.1%
Unrestricted net assets $978,194 $935,421 $905,771 $809,735 $703,017
Temporarily restricted net assets $57,024 $0 N/A N/A N/A
Permanently restricted net assets $0 $0 N/A N/A N/A
Total restricted net assets $57,024 $0 $0 $0 $0
Total net assets $1,035,218 $935,421 $905,771 $809,735 $703,017

Key data checks

Key data checks info 2017 2018 2019 2020 2021
Material data errors No No No No No

Operations

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

Documents
Letter of Determination is not available for this organization
Form 1023/1024 is not available for this organization

Executive Director

Priscilla Ma

Number of employees

Source: IRS Form 990

BAND OF PARENTS INC

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

BAND OF PARENTS INC

Board of directors
as of 02/23/2023
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

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

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 2/23/2023

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 (cisgender)
Sexual orientation
Heterosexual or straight
Disability status
Person without a disability

Race & ethnicity

Gender 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.