BAND OF PARENTS INC
Bound By Hope
BAND OF PARENTS INC
EIN: 26-1227872
as of November 2024
as of November 11, 2024
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.
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.
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.
Free Blood Pressure Monitors
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.
Where we work
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
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.
-
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
Financial documents
Download audited financialsRevenue vs. expenses: breakdown
Liquidity in 2022 info
38.57
Months of cash in 2022 info
2.6
Fringe rate in 2022 info
11%
Funding sources info
Assets & liabilities info
Financial data
BAND OF PARENTS INC
Balance sheetFiscal Year: Jan 01 - Dec 31
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
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.
Created in partnership with
Business model indicators
Profitability info | 2018 | 2019 | 2020 | 2021 | 2022 |
---|---|---|---|---|---|
Unrestricted surplus (deficit) before depreciation | -$42,643 | -$29,476 | -$95,825 | -$106,507 | -$198,123 |
As % of expenses | -5.9% | -3.2% | -9.1% | -10.1% | -21.9% |
Unrestricted surplus (deficit) after depreciation | -$42,773 | -$29,650 | -$96,036 | -$106,718 | -$198,334 |
As % of expenses | -5.9% | -3.2% | -9.1% | -10.1% | -21.9% |
Revenue composition info | |||||
---|---|---|---|---|---|
Total revenue (unrestricted & restricted) | $624,462 | $884,213 | $926,630 | $950,075 | $744,483 |
Total revenue, % change over prior year | -40.6% | 41.6% | 4.8% | 2.5% | -21.6% |
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 | 2.3% | 1.8% | 1.4% | 0.6% | 1.1% |
Government grants | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
All other grants and contributions | 97.6% | 98.2% | 98.1% | 96.7% | 99.2% |
Other revenue | 0.0% | 0.0% | 0.5% | 2.7% | -0.3% |
Expense composition info | |||||
---|---|---|---|---|---|
Total expenses before depreciation | $724,129 | $925,007 | $1,056,463 | $1,053,996 | $905,663 |
Total expenses, % change over prior year | 25.9% | 27.7% | 14.2% | -0.2% | -14.1% |
Personnel | 0.8% | 0.0% | 12.8% | 17.6% | 21.8% |
Professional fees | 33.1% | 12.4% | 3.8% | 1.7% | 1.3% |
Occupancy | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
Interest | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
Pass-through | 62.3% | 85.2% | 79.8% | 76.4% | 71.7% |
All other expenses | 3.8% | 2.4% | 3.7% | 4.3% | 5.2% |
Full cost components (estimated) info | 2018 | 2019 | 2020 | 2021 | 2022 |
---|---|---|---|---|---|
Total expenses (after depreciation) | $724,259 | $925,181 | $1,056,674 | $1,054,207 | $905,874 |
One month of savings | $60,344 | $77,084 | $88,039 | $87,833 | $75,472 |
Debt principal payment | $0 | $0 | $0 | $0 | $0 |
Fixed asset additions | $0 | $813 | $0 | $0 | $0 |
Total full costs (estimated) | $784,603 | $1,003,078 | $1,144,713 | $1,142,040 | $981,346 |
Capital structure indicators
Liquidity info | 2018 | 2019 | 2020 | 2021 | 2022 |
---|---|---|---|---|---|
Months of cash | 16.0 | 5.2 | 2.4 | 3.6 | 2.6 |
Months of cash and investments | 16.0 | 12.3 | 9.0 | 7.4 | 6.1 |
Months of estimated liquid unrestricted net assets | 15.5 | 11.7 | 9.2 | 8.0 | 6.7 |
Balance sheet composition info | 2018 | 2019 | 2020 | 2021 | 2022 |
---|---|---|---|---|---|
Cash | $964,220 | $404,361 | $211,702 | $312,489 | $199,936 |
Investments | $0 | $546,270 | $584,391 | $333,447 | $262,957 |
Receivables | $0 | $0 | $8,406 | $52,500 | $32,000 |
Gross land, buildings, equipment (LBE) | $649 | $1,055 | $1,055 | $1,055 | $1,055 |
Accumulated depreciation (as a % of LBE) | 57.6% | 13.4% | 33.4% | 53.4% | 73.4% |
Liabilities (as a % of assets) | 3.9% | 5.7% | 0.9% | 1.1% | 2.3% |
Unrestricted net assets | $935,421 | $905,771 | $809,735 | $703,017 | $504,683 |
Temporarily restricted net assets | $0 | N/A | N/A | N/A | N/A |
Permanently restricted net assets | $0 | N/A | N/A | N/A | N/A |
Total restricted net assets | $0 | $0 | $0 | $0 | $0 |
Total net assets | $935,421 | $905,771 | $809,735 | $703,017 | $504,683 |
Key data checks
Key data checks info | 2018 | 2019 | 2020 | 2021 | 2022 |
---|---|---|---|---|---|
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 01/24/2024
Board of directors data
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
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
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
Transgender 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.