Disease, Disorders, Medical Disciplines

MAKING HEADWAY FOUNDATION INC

Chappaqua, NY

Mission

Making Headway Foundation provides care and comfort for children with brain and spinal cord tumors while funding medical research geared toward better treatments and a cure.

Ruling Year

1996

Executive Director

Mr. Daniel Lipka

Main Address

115 King Street

Chappaqua, NY 10514 USA

Keywords

children, brain, spinal, tumor, support, education, research

EIN

13-3906297

 Number

1227004368

Cause Area (NTEE Code)

Brain Disorders (G48)

Pediatrics (G98)

IRS Filing Requirement

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

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Social Media

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Programs + Results

What we aim to solve New!

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Our programs

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

SOURCE: Self-reported by organization

Educational Consulting

Care at the Hospital

Family Fun Events

Scientific Research Initiatives

Individual and Family Counseling

Scholarships

Bereavement and Funeral Expense Support

Where we workNew!

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Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of hours of psychological care provided to children and their families

TOTALS BY YEAR
Population(s) served

Children and youth (0-19 years),

Families

Related program

Individual and Family Counseling

Context notes

Services provided to families with a child diagnosed with a brain or spinal cord tumor.

Number of hours of educational specialist service provided to children and their families

TOTALS BY YEAR
Population(s) served

Children and youth (0-19 years),

Caregivers,

Families

Related program

Educational Consulting

Context notes

Services provided to families with a child diagnosed with a brain or spinal cord tumor.

Number of families who participate in fun family events

TOTALS BY YEAR
Population(s) served

Children and youth (0-19 years),

Caregivers,

Families

Related program

Family Fun Events

Context notes

Fun family events are open to families with a child diagnosed with a brain or spinal cord tumor.

Number of medical grants funded

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

Scientific Research Initiatives

Number of college scholarships awarded

TOTALS BY YEAR
Population(s) served

Children and youth (0-19 years)

Related program

Scholarships

Context notes

Only those who had been diagnosed with a brain or spinal cord tumor are eligible.

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

The mission of Making Headway is to provide care and comfort for children with brain and spinal cord tumors while funding medical research geared to better treatments and a cure. We will focus on children who are living in the tristate area who are diagnosed with a brain or spinal cord tumor. Our plan is to fund translational research and clinical trials that will lead to improved treatments and eventually a cure, while providing support services to make the family's journey through a devastating disease a bit more bearable for the children and their families.

Care: at the New York University Langone Medical Center we make the hospital stay more comfortable by enhancing the excellent medical care provided by the doctors, nurses and staff. At the Hassenfeld Children's Cancer Center, the day hospital where children come for treatments, Making Headway provides funding for a psychologist, massage and yoga services and nutritional snacks in the playroom.

Comfort: once the hospital stay has ended, and families are left to cope by themselves, trying to return to a more “normal" life, Making Headway continues its high level of support. Our Ongoing Care Program provides a diverse variety of free-of-charge support services, including support groups, individual psychological counseling and educational advocacy. For parents who have lost children, periodic bereavement groups and assistance with funeral expenses are offered. Family Fun Day, a yacht cruise and a New York City show are free of charge to the families.

Cure: Making Headway's mission also encompasses the search for better treatments and a cure. We fund basic medical research, a Clinical Trials Manager to oversee all ongoing and new trials, training fellowships and a Biorepository Center that provides brain tumor tissue samples to researchers around the world.

For the past 20 years, Making Headway has been dedicated to helping children who have been diagnosed with brain or spinal cord tumors. In this time, we have developed excellent relationships with the pediatric physicians, pediatric psychologists, educational specialists, researchers, and impacted families who have collectively helped design our programs. Our experience and expertise provides the framework to develop, monitor, evaluate, and adjust programs so they are efficient and effective.

In addition to our supporters and Board members, Making Headway has a network of families of the children we have served over the years who help us raise funds for various special events throughout the year. Our winter show has consistently raised an average of $485,000 for the past 14 years. Other events and contributions enable us to raise a total of $800,000 to $1 million per year. We have a small but dedicated staff of two people in our office which enables us to keep administrative and fund raising expenses very low.

Making Headway will monitor the progress of research projects and clinical trials through a detailed semi-annual and annual reporting process. For psychological services, we will rely on feedback from the parents who have benefited by being able to cope with the many stresses they face as a result of their child's illness. For educational services, we will rely on feedback from our consultants on the progress the children they serve are making in school.

Over the past 20 years, Making Headway has helped the families of thousands of children diagnosed with brain and spinal cord tumors through a series of holistic programs and services intended to ease their journey through a difficult time. When we started our efforts, we engaged just one psychological consultant, and due to increased demand, we have expanded to three plus a psychiatrist. Early on, the need for educational consulting became apparent, and we gradually increased from one to three consultants. When many of the children we helped survived and were preparing to enter college, we began to offer them scholarships to offset the costs of their education. Our investments in medical research and training have been equally important, leading to new breakthroughs and through our fellowship grants training the next generation of pediatric neuro-oncologists.

Looking forward, there are many accomplishments still ahead of us. Recently, it was announced that brain and spinal cord tumors are the leading cause of death among children with any type of cancer. Our goal to fund a cure is still a driving force of our mission and we will continue to invest in research programs and clinical trials to eventually achieve this objective. We also hope to provide a wider array of services and scholarships to children who have been diagnosed with a brain or spinal cord tumor. Making Headway is committed to increasing the survival rate and providing the needed services to these families before, during, and after their recovery.

External Reviews

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Financials

MAKING HEADWAY FOUNDATION INC

Fiscal year: Jan 01 - Dec 31

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  • Forms 990 for 2016, 2015 and 2014
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Operations

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

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FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2016, 2015 and 2014
A Pro report is also available for this organization for $125.
Click here to see what's included.

Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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?

No

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

No

ETHICS & 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