Friends of Karen, Inc.

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.