PLATINUM2024

Friends of Karen, Inc.

Supporting critically ill children and their families

North Salem, NY   |  www.friendsofkaren.org

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Mission

The mission of Friends of Karen is to provide emotional, financial and advocacy support for children with a life-threatening illness like cancer, and their families, to help them remain stable, functioning, and able to cope. Friends of Karen serves families living in the New York City, Long Island, the Hudson Valley region, Northern New Jersey and southern Connecticut. It offers its lifeline of support services, at no cost to families, so they have fewer worries and more time to care for the ill child. Friends of Karen's social workers, child life specialists and creative arts therapists provide services tailored to each family for the duration of the child's treatment. Better Business Bureau Accredited Charity.

Notes from the nonprofit

“When I joined Montefiore I was quickly introduced to this tremendous organization. As the sole pediatric palliative care physician, I have had personal experience of suffering made easier by Friends of Karen. I learned from one patient’s mother her child had home and hospital teams. I was stunned to learn it wasn’t their large family but Friends of Karen. I never pictured the “friends” were trained social workers and child life therapists who provided expertise free of charge, as well as economic support for vital needs like rent, cell phone and electricity. Who would have the generosity of heart and foresight to really understand the experience of critical illness and ease the burdens with such skill? It turns out that is the history and tradition of Friends of Karen to treat each family as they would a dear friend always available, supportive and offering love through service. Friends of Karen is a truly unique organization in the New York tristate area. “ -Sarah Norris, MD, M.Ed.

Ruling year info

1983

Executive Director

Ms. Judith R. Factor

Main address

118 Titicus Road

North Salem, NY 10560 USA

Show more contact info

EIN

14-1612290

NTEE code info

Personal Social Services (P50)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2023, 2022 and 2021.
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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Friends of Karen aims to address how family members are affected by a child's diagnosis and treatment for a life-threatening illness. This includes the parents' loss of income while they must care for their ill child, their difficulty navigating the health and social services systems, and the emotional struggles of every family member. In this context, we are exploring whether to go deeper in our services or expand geographically, considering the implications on staffing, caseload, funding, etc. Enmeshed in this strategic question is the pending decision on whether to build a new headquarters for the organization, put on hold during the pandemic. Our current headquarters is woefully inadequate physically, in addition to hampering growth. What will new space allow us to do related to program expansion, community involvement, and revenue generation? In addition to these consequential strategic issues, staff will be looking at our program model, based on learnings gained post COVID.

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?

Family Support Program, encompassing emotional, financial and advocacy support

No one is prepared to hear the words, Your child has cancer. What would you do? Where would you turn for help? Thats why NY Tri-State families need Friends of Karen for support when their child is facing any life-threatening illness including cancer. Our model is a blend of strategic financial assistance, emotional support, illness education,and advocacy. We are the only local organization offering comprehensive supports, tailored to the individual family, for the entirety of the child's treatment, surviovorship and through bereavement.

Population(s) Served
Children and youth
Ethnic and racial groups
Economically disadvantaged people

Birthdays, Back to School, and Holidays. Children with a life-threatening illness need to maintain a sense of normalcy including marking milestone occasions, At the same time, parents caring for an ill child have little time or money to shop for gifts or plan family celebrations. Our Gifts Program provides the ill child and their siblings with birthday, holiday and back-to school gifts to bring joy to their difficult time.

Population(s) Served
Children and youth

A family’s world is turned upside down the moment they learn their child has a life-threatening illness like cancer. The stresses of a brother's or sister's life-threatening illness can evoke a variety of feelings for children and parents alike. Since 2009, Friends of Karen has been helping siblings, the ill child, and parents to better understand the child's illness, develop coping strategies and build resilience. Today, our program includes in-person and virtual one-on-one sessions, as well as group virtual programs focused on mutual support and fun. These services are conducted by our experienced child life specialists and creative arts therapists.

Population(s) Served
Children and youth
Parents

Each year, we gather, pack up and ship school supplies to 850+ Friends of Karen children and their siblings. We ask parents to send in their child's school supply lists and we fulfill them with the exact items requested. Children also receive gift cards for clothing.

Population(s) Served
Children and youth

In 2019, Friends of Karen created a A Pathway of Compassion and Hope filled with loving messages from all of our supporters and families.

We invite you to participate in this fundraising opportunity and leave a lifetime legacy of your support. The bricks will be engraved with your personal message and placed outside Friends of Karen headquarters, located in North Salem, NY. You’ll also receive a small replica keepsake brick with your message, perfect for displaying. For more information, Contact Gabriella at [email protected] or at 914-617-4047

Population(s) Served
Adults

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 chronically ill patients served

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

Family Support Program, encompassing emotional, financial and advocacy support

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

This only represents the ill children we serve in each year. It does not include the siblings or the bereaved families that receive support after their child's death.

Number of families served in cancer treatment

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

Family Support Program, encompassing emotional, financial and advocacy support

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

These numbers represent the families with an ill child under treatment for illness like cancer during each year. Typically, children with cancer are approximately 85% of those we serve.

Number of families served

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

Family Support Program, encompassing emotional, financial and advocacy support

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

This figure encompasses families with a child in treatment during each year, as well as bereaved families receiving services.

Number of youth who demonstrate that they have developed coping skills

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

Family Support Program, encompassing emotional, financial and advocacy support

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

These numbers include ill children and their siblings, all of whom receive services with goal of remaining stable, functioning and able to cope.

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.

Friends of Karen ensures no family has to face their child's life-threatening illness alone. We provide individualized support, at no cost to the family, for the duration of the child's treatment (and in some circumstances after formal treatment ends) and, when necessary, their bereavement. The purpose of these efforts is to ensure a family remains stable, functioning and able to cope when the ill child is in treatment - a period that may last several months or even years. Ultimately, we strive to level the playing field, to provide access to the necessary healthcare and psychosocial services for all children with a life-threatening illness (and their families), without regard to their socioeconomic status, race, ethnicity,language, nationality, gender identity, religion, disability or other defining characteristics. Our goal is that no matter what the outcome of the child's illness, the family will be able to stay intact and go on with their lives.

Our Family Support Team works with families to continually assess their complex needs and, coordinates and advocates for an array of services, as well as provides support through our own team of skilled and compassionate professionals. Each family is matched with an experienced social worker, who ensures they receive emotional support, financial assistance, and practical guidance to cope during this crisis that can last months to several years. Our social workers may also refer children to our Sibling Support Program delivered by our child life specialists and creative arts therapist for one-on-one sessions and/or group support.

Our Family Support Program pioneered and today exemplifies the standards of psychosocial care for children with cancer that is applicable to other life-threatening illnesses as well. We provide the following personalized concrete interventions at no cost to families:

• Individualized support for each family member to prepare and guide families through each challenge while their child is in treatment, including sibling support.
• Financial assistance to ease the enormous costs, which can include:
o Travel costs to and from treatments and hospitals
o Childcare expenses
o Basic living expenses when there is a loss of income from illness-related work disruptions, including rent/mortgage, utilities, and more
o Gift cards and support to purchase food and clothing
o Medical expenses not covered by insurance
o Internet costs so the ill child can make telehealth visits and attend school remotely
• Assistance with issues that can overwhelm a family, such as insurance billing, changed family dynamics, and special educational needs.
• Connecting families to organizations and government programs to ensure they receive help for which they qualify.
• Virtual groups for children for mutual support, self-esteem building, and play;
• Survivorship support sessions for children to help prepare to return to school after a long illness-related absence. Continue to provide a limited number of financial supports to children who have gone off formal treatment but have serious healthcare needs. (2022 Pilot Program)
• End-of-life and bereavement support for parents and siblings, including bereavement support groups for parents (English & Spanish), and bereavement education workshops (2023 Pilot Program)
• Gifts program to mark holidays and milestones to help families maintain a sense of normalcy.

Friends of Karen started in 1978 with one ill child (16-year-old Karen MacInnes) and one visionary founder (Sheila Petersen). Sheila's goal was to help families of critically ill children with the vital emotional and financial support they need to emerge from their health crisis stable and whole.

For nearly 45 years, Friends of Karen has provided effective comprehensive services to nearly 18,000 children (both ill children and their well siblings) in the New York Tri-State region, and their families. Recognizing the impact of the child's illness on the entire family, these services have helped families remain stable, functioning and able to cope when their child has a life-threatening illness like cancer.

Our work is unique: Friends of Karen is the only organization in New York, New Jersey and Connecticut that helps families cope with their child’s cancer or other life-threatening illness, from diagnosis through treatment, a process that can last months or even years. And we provide a remarkable depth and breadth of palliative psychosocial services at no cost to families, another unique feature of Friends of Karen.

We serve between 550 and 650 families each year, encompassing ill children, siblings, parents, and bereaved families who continue to receive active support with vital assistance.

Friends of Karen pioneered the comprehensive supports that are now encompassed under the 2015 publication of “Standards for Psychosocial Care for Children with Cancer and Their Families.” The benefit of this work extends to the children we serve with other life-threatening illnesses.

These Standards confirmed the importance of our strategies to address childhood cancer as a disease that is as much a psychological disease as it is a physical one, and that children and families need help managing the day-to-day isolation, emotional pain, treatment challenges and frustrating restrictions on their daily life. Today, we continue to provide these services with a high level of effectiveness in meeting the needs of parents and children facing a life-threatening illness.

Our 29-member staff – 17 full time and 12 part time – includes licensed, experienced and compassionate social workers, child-life specialists and creative arts therapists, as well as hundreds of volunteers who provide a wealth of services and support.

What started with one child in one family in Westchester County, NY, has grown rapidly and our service area now encompasses the metropolitan New York area, including the five boroughs of New York City, Long Island, the Hudson Valley, northern New Jersey and southern Connecticut. Today, Friends of Karen has served nearly 18,000 ill children and siblings (as of 09/2022) since the organization's inception.

Since the COVID-19 pandemic, we have seen increase demand for our financial and emotional support. We have intensified our support to meet these demands and continue to look at new ways to help families remain stable, functioning and able to cope. Ultimately, our goal is to help more families that need our support and develop services when there are no other resources available to families. We provide the crucial bridge from the hospital to the home, especially now as more treatments are provided on an outpatient basis.

The following organizational priorities were developed through a focus group with Friends of Karen’s family support team of professionals, a survey of all staff, ongoing feedback from families, and in-depth retreats among the Board of Directors.

Priorities for 2023:
The Friends of Karen Board of Directors has identified three priority areas of focus for the next few years. They include:
• Infrastructure needs to support Friends of Karen today and for future growth, including the North Salem, NY headquarters, upgraded technology and technical expertise;
• Deepening services for families in a variety of ways, as well as increasing direct financial support to families;
• Increasing our public presence which is integral to achieving the above.



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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • 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 identify where we are less inclusive or equitable across demographic groups, 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 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 look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, 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 find the ongoing funding to support feedback collection

Financials

Friends of Karen, 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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  • Compare nonprofit financials to similar organizations

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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.

Friends of Karen, Inc.

Board of directors
as of 02/20/2024
SOURCE: Self-reported by organization
Board chair

Mr. Richard Sgaglio

The Osborn

Term: 2022 - 2025

Laura Salerno-Evans

LSPR/Hill + Knowlton

Tom Jocelyn

Scientific Electric, Inc.

Francisco Barrenechea

West U Capital

Arlene del Mundo

Northwell Health / Lenox Hill

Pamela Hervey

Retired (Finance)

Jonathan Malawer

Pier 61 Partners

Louis Meltzer

LEM Equities

Michael Nieves

Penn Entertainment

Evan Schreiber

Omada Health

Paul Smadbeck

Jones Lang LaSalle

Steven Swirsky

Epstein Becker Green, P.C

Steven Connolly

Co-Source Solutions

Gina Lodolini

Kids Are Great Dental Associates

Sarah Norris

The Children's Hospital at Montefiore

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 10/20/2023

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
White/Caucasian/European
Gender identity
Female, Not transgender

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

No data

Equity strategies

Last updated: 10/07/2022

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 analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • 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 disaggregate data by demographics, including race, in every policy and program measured.
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.
  • 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.