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
2007
Executive Director
Priscilla Ma
Main address
2248 Broadway #1009
New York, NY 10024 USA
EIN
26-1227872
Cancers
Population served
Children and youth
Adults
Parents
Non-adult children
NTEE code
Cancer (G30)
IRS subsection
501(c)(3) Public Charity
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Tax forms
Communication
Programs and results
What we aim to solve
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
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.
Phase 5 Clinical Trial of Bivalent Vaccine for High-Risk Neuroblastoma
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.
Manufacture & Testing of Hu3f8 Bispecific Antibody (Sloan Kettering)
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.
Prevention of Ototoxicity in Children with Neuroblastoma
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.
Phase 1 Study of 131-1 mIBG, Nivolumab and ch14.18/CHO in relapsed/refractory neuroblastoma
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.
Next Generation Personalized Neuroblastoma Therapy for Neuroblastoma (NEPENTHE), Children’s Hospital
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.
Where we work
External reviews
Videos
Our results
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
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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Who are the people you serve with your mission?
Band of Parents is a support resource for the newly diagnosed of neuroblastoma and their families.
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How is your organization collecting feedback from the people you serve?
Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email,
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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,
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What significant change resulted from feedback?
The past couple of years, families with children in treatment in New York City were faced with a special challenge: not only did they have to worry about keeping their children safe from COVID-19 while simultaneously fighting neuroblastoma, but they also faced a lack of housing options. Band of Parents identified a midtown hotel for subsidized housing and reserved a dedicated floor for these families, granting them easy access to their appointments at MSKCC. Each room was equipped with a kitchenette for storing medicine and meal preparation. Every Wednesday, we ordered in pizza and we also provided safe and clean transportation to appointments. We also provided toiletries and masks. We wanted families to have less to worry about so they could focus on their children's treatment.
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With whom is the organization sharing feedback?
The people we serve, Our staff, Our board, Our funders, Our community partners,
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How has asking for feedback from the people you serve changed your relationship?
Through regular interaction, we strengthen the relationships we have with our beneficiaries and learn about new opportunities where we can help support them through their journey.
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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.),
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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
Financial documents
Download audited financialsRevenue vs. expenses: breakdown
Liquidity in 2020 info
104.75
Months of cash in 2020 info
2.4
Fringe rate in 2020 info
0%
Funding sources info
Assets & liabilities info
BAND OF PARENTS INC
Revenue & expensesFiscal Year: Jan 01 - Dec 31
SOURCE: IRS Form 990
BAND OF PARENTS INC
Balance sheetFiscal Year: Jan 01 - Dec 31
SOURCE: IRS Form 990
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: Jan 01 - Dec 31
SOURCE: IRS Form 990
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 | 2016 | 2017 | 2018 | 2019 | 2020 |
|---|---|---|---|---|---|
| Unrestricted surplus (deficit) before depreciation | $37,160 | $449,495 | -$42,643 | -$29,476 | -$95,825 |
| As % of expenses | 5.1% | 78.2% | -5.9% | -3.2% | -9.1% |
| Unrestricted surplus (deficit) after depreciation | $37,046 | $449,365 | -$42,773 | -$29,650 | -$96,036 |
| As % of expenses | 5.0% | 78.1% | -5.9% | -3.2% | -9.1% |
| Revenue composition info | |||||
|---|---|---|---|---|---|
| Total revenue (unrestricted & restricted) | $782,432 | $1,051,148 | $624,462 | $884,213 | $926,630 |
| Total revenue, % change over prior year | 25.0% | 34.3% | -40.6% | 41.6% | 4.8% |
| 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 | 0.1% | 0.3% | 2.3% | 1.8% | 1.4% |
| Government grants | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| All other grants and contributions | 99.9% | 99.6% | 97.6% | 98.2% | 98.1% |
| Other revenue | 0.0% | 0.0% | 0.0% | 0.0% | 0.5% |
| Expense composition info | |||||
|---|---|---|---|---|---|
| Total expenses before depreciation | $734,890 | $574,962 | $724,129 | $925,007 | $1,056,463 |
| Total expenses, % change over prior year | 34.1% | -21.8% | 25.9% | 27.7% | 14.2% |
| Personnel | 0.8% | 1.0% | 0.8% | 0.0% | 12.8% |
| Professional fees | 30.9% | 40.9% | 33.1% | 12.4% | 3.8% |
| Occupancy | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Interest | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Pass-through | 66.0% | 52.5% | 62.3% | 85.2% | 79.8% |
| All other expenses | 2.3% | 5.6% | 3.8% | 2.4% | 3.7% |
| Full cost components (estimated) info | 2016 | 2017 | 2018 | 2019 | 2020 |
|---|---|---|---|---|---|
| Total expenses (after depreciation) | $735,004 | $575,092 | $724,259 | $925,181 | $1,056,674 |
| One month of savings | $61,241 | $47,914 | $60,344 | $77,084 | $88,039 |
| Debt principal payment | $0 | $0 | $0 | $0 | $0 |
| Fixed asset additions | $649 | $0 | $0 | $813 | $0 |
| Total full costs (estimated) | $796,894 | $623,006 | $784,603 | $1,003,078 | $1,144,713 |
Capital structure indicators
| Liquidity info | 2016 | 2017 | 2018 | 2019 | 2020 |
|---|---|---|---|---|---|
| Months of cash | 9.1 | 22.9 | 16.0 | 5.2 | 2.4 |
| Months of cash and investments | 9.1 | 22.9 | 16.0 | 12.3 | 9.0 |
| Months of estimated liquid unrestricted net assets | 8.6 | 20.4 | 15.5 | 11.7 | 9.2 |
| Balance sheet composition info | 2016 | 2017 | 2018 | 2019 | 2020 |
|---|---|---|---|---|---|
| Cash | $556,194 | $1,096,164 | $964,220 | $404,361 | $211,702 |
| Investments | $0 | $0 | $0 | $546,270 | $584,391 |
| Receivables | $0 | $0 | $0 | $0 | $8,406 |
| Gross land, buildings, equipment (LBE) | $649 | $649 | $649 | $1,055 | $1,055 |
| Accumulated depreciation (as a % of LBE) | 17.6% | 37.6% | 57.6% | 13.4% | 33.4% |
| Liabilities (as a % of assets) | 0.0% | 5.6% | 3.9% | 5.7% | 0.9% |
| Unrestricted net assets | $528,829 | $978,194 | $935,421 | $905,771 | $809,735 |
| Temporarily restricted net assets | $30,333 | $57,024 | $0 | N/A | N/A |
| Permanently restricted net assets | $0 | $0 | $0 | N/A | N/A |
| Total restricted net assets | $30,333 | $57,024 | $0 | $0 | $0 |
| Total net assets | $559,162 | $1,035,218 | $935,421 | $905,771 | $809,735 |
Key data checks
| Key data checks info | 2016 | 2017 | 2018 | 2019 | 2020 |
|---|---|---|---|---|---|
| Material data errors | No | No | No | No | No |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
Executive Director
Priscilla Ma
Number of employees
Source: IRS Form 990
BAND OF PARENTS INC
Officers, directors, trustees, and key employeesSOURCE: IRS Form 990
Compensation data
There are no highest paid employees recorded for this organization.
BAND OF PARENTS INC
Board of directorsas of 02/23/2023
Board of directors data
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
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
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
Gender identity
Sexual orientation
Disability
We do not display disability information for organizations with fewer than 15 staff.
Equity strategies
Last updated: 01/19/2023GuideStar 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
- 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 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.
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- Contractor and/or Paid Preparer data for 2020, 2019, 2018
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