PLATINUM2023

MAKING HEADWAY FOUNDATION INC

Care, Comfort, and Cure

Chappaqua, NY   |  www.makingheadway.org

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 info

1996

Executive Director

Mr. Daniel Lipka

Main address

115 King Street

Chappaqua, NY 10514 USA

Show more contact info

EIN

13-3906297

NTEE code info

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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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Medical science has made significant, rapid advances in the treatment of pediatric brain and spinal cord tumors. Afflicted children are living longer than ever before. Yet even the best medical team can address only some aspects of the care and support these children and their families need. Making Headway provides supportive care and comfort to families of children diagnosed with a brain or spinal cord tumor, before surgery, during the hospital stay, and after the child returns home. Our programs and services are designed to help children and their families cope with the fear, anxiety, and neurological consequences of hospitalization, surgery, chemotherapy, and radiation treatments. At the same time, Making Headway is helping to find a cure, funding vital medical research in a field that has long been underfunded.

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?

Educational Consulting

As part of its Ongoing Care Program Making Headway offers educational consulting services to address the adjustment issues related to the children’s learning disabilities and difficulties in returning to school as well as their rights under Federal law. It currently assists the children and their parents as follows:
 
·         interpret neuropsychological reports and other evaluations to assess the educational needs of the child in his or her school setting;
·         help parents adjust to new circumstances and new responsibilities relating to the post-treatment needs of their children;
·         teach  those involved with the child’s education to understand the impact that a brain or spinal cord tumor has on the child’s academic and social functioning in school;
·         assist families and school personnel to identify and implement services, modifications in curriculum, testing, and supplementary materials to optimize the child’s educational program;
·         review Individual Education Plans (IEP) for each child to make sure that all the services and entitlements necessary to help the child learn are included;
·         participate in special education committee meetings at the child’s school to ensure that the school provides the child with the extra help required by law; and
·         find alternative school settings if the current placement is unable to meet the educational needs of the child.

Population(s) Served
Families

To make treatment visits at the Stephen D. Hassenfeld Children's Center for Cancer and Blood Disorders at NYU Langone Medical Center more comfortable, engaging and soothing for children and parents, Making Headway Foundation sponsors the following:A Child Life Specialist who uses play and recreation to encourage children to express their thoughts and feelings and who ensures that the playroom remains an oasis of comfort and fun.A Clinical Research Manager who coordinates the clinical research trials for pediatric neuro-oncology patients.A Senior Psychologist who provides psychological services to patients, including neuro-psychological testing, comprehensive assessments of abilities and needs, crisis interventions and support groups.A Professional Clown whose slapstick, fun and frivolity inspire laughter from both children and adults-a vital part of the healing process-while the children are undergoing treatments.A Massage Therapist and a Yoga Instructor who provide relaxation and respite for both children and parents.

Making Headway Foundation also provides snacks, such as fruit, cheese, pastries and drinks, to relieve children's hunger pangs while they wait to see the doctor or receive treatment.

Population(s) Served
People with diseases and illnesses

Twice per year the Foundation hosts family fun events for patients and their parents.
The first is a picnic for 500 people hosted a private residence which boasts a sumptuous dinner, swimming, entertainment and games.
 
Following, in the fall, is a cruise and luncheon held on a yacht in Manhattan.

Population(s) Served
People with diseases and illnesses

Making Headway Foundation has a dedication to funding research in addition to our programs of patient care. For 2011/2012, the Foundation has made awards as follows:

Pediatric Oncology Laboratory at NYU ($1,000,000) – As the number of pediatric brain tumors is small, scientific research tends to focus on illness with significantly more frequency, such as breast cancer, Leukemia and AIDS. Research is needed to discover the underlying biological pathways that drive brain tumor initiation and progression. This knowledge will help improve treatment outcomes for children by developing novel, tumor-specific therapeutic approaches that can be validated for safety and efficiency through clinical trials. Development of this dedicated Translational Neuro-oncology Research Laboratory will make huge strides in this arena.

Pediatric Neuro-Oncology Fellowship ($80,000) – This grant is for a one-year fellowship for Dr. Genevieve Legault. She will evaluate and treat a broad range of CNS tumors in children, manage neurologic complications of systemic cancer in children, participate in the conduct of clinical trails and prepare for an academic leadership career in pediatric neuro-oncology.

Clinical Trials Manager ($47,000) – The Clinical Trials Office at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood disorders at NYU Langone Medical Center manages all research studies in the Division of Pediatric Hematology/Oncology of the Department of Pediatrics, including the research component of the Pediatric Neuro-Oncology Program. The Clinical Trials Manager oversees this program.

Family Wellness Program ($93,000) – This grant is for a full time Wellness Coordinator at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood disorders at NYU Langone Medical Center. The Coordinator will oversee the recreation program, assist in coordinating all aspects of the Wellness Program and take a lead in continuing to grow the latter.

Population(s) Served
People with diseases and illnesses

Making Headway Foundation offers free-of-charge individual counseling sessions, conducted in person or by phone, with licensed psychologists who are specialists in dealing with the unique issues families in this situation face. This short-term individual counseling provides an opportunity for children or parents to find ways to cope with their experiences.

Population(s) Served
People with diseases and illnesses

Making Headway is delighted to support and administer The Scott J. Reisser Memorial Scholarship Fund. Established in 2007, the fund is the culmination of Scott’s family’s efforts to create a fitting memorial to their beloved son, brother, grandson and nephew, as well as friend to so many. Scott’s most cherished dream was to graduate from college, a milestone he fell just short of achieving. After his death in 2006, it was clear that the most appropriate way to honor his memory would be by helping other young brain tumor survivors to achieve their educational goals.

Four Scott J. Reisser Memorial Scholarships, each a one-time $5,000 award, are granted to deserving applicants each year. The Reisser family generously funds two of these scholarships and Making Headway Foundation funds the other two.

Population(s) Served
People with diseases and illnesses

Making Headway will provide funds to assist in the payment of funeral expenses and bereavement support.

Population(s) Served
People with diseases and illnesses

Where we work

Awards

Nonprofit of the Year 2013

Chappaqua Millwood Chamber of Commerce

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 hours of psychological care provided to children and their families

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

Children and youth, Families

Related Program

Individual and Family Counseling

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Services provided to families with a child diagnosed with a brain or spinal cord tumor. https://makingheadway.org/care/#toggle-id-2

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

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

Children and youth, Caregivers, Families

Related Program

Educational Consulting

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

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

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

Children and youth, Caregivers, Families

Related Program

Family Fun Events

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Fun family events are open to families with a child diagnosed with a brain or spinal cord tumor. Events for 2020 were canceled due to COVID. Visit https://makingheadway.org/comfort/#toggle-id-2

Number of medical grants funded

This metric is no longer tracked.
Totals By Year
Related Program

Scientific Research Initiatives

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of college scholarships awarded

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

Children and youth

Related Program

Scholarships

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Only those who had been diagnosed with a brain or spinal cord tumor are eligible. Visit https://makingheadway.org/scholarship/ for more information on this program.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

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\u0027s 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\u0027s 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.\r\n\r\nComfort: once the hospital stay has ended, and families are left to cope by themselves, trying to return to a more \u201Cnormal\u0022 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.\r\n\r\nCure: Making Headway\u0027s 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.

Since 1996, 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 three people in our office which enables us to keep administrative and fund raising expenses very low.

Since 1996, 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.

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.
  • Who are the people you serve with your mission?

    We work with families on a individual basis to better understand their needs. We also utilize surveys and collect feedback wherever we can.

  • 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), Case management notes, Constituent (client or resident, etc.) advisory committees,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, 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,

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board,

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, 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 demographics (e.g., race, age, gender, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • 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

MAKING HEADWAY FOUNDATION 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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Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • 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.

MAKING HEADWAY FOUNDATION INC

Board of directors
as of 01/19/2023
SOURCE: Self-reported by organization
Board chair

Elisa Greenbaum

Retired

Term: 2022 -

Sam Schwartz

Eiseman, Levine et al.

Elisa Greenbaum

Maya Manley

Clint Greenbaum

Greg Taubin

Studley, Inc.

David Almeida

Charles McMahon

SSA & Company

Audrey Manley

Susan Rubin

Jeffrey Allen

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? Not applicable
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 3/19/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

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

Equity strategies

Last updated: 03/19/2021

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 review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • 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 have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.