Friends of Karen, Inc.

• We provide our assistance – at no cost – from diagnosis through treatment, for periods that can range from a few months to many years; tailor our financial and emotional support to meet each family’s individual needs; recognize the special needs of siblings – and offer individualized interventions to help them cope with the illness’ impact on their life. • Every family receives the support of an experienced and caring Friends of Karen social worker for the trajectory of the child’s illness who will travel to the family’s home (or child’s hospital room) to accommodate their difficult schedule, provide easier access to our services, and gain a deeper understanding of a family’s situation. • We help maintain family functioning by: o Educating family members about the illness; o Providing anticipatory guidance (to help family members anticipate the challenges they will face in their employment/family/social and financial life – and in school); and, o Helping family members communicate with each other about the illness and with other important people in their lives. • We offer culturally and linguistically-sensitive guidance to our Spanish (and other non-English) speaking families to help them understand the illness, access available services, and improve communication with doctors and the medical community. Every family is assessed individually. We consider many factors in determining the most effective way to assist a family financially, including the child’s diagnosis, length of treatment, the distance from their treatment center, single parent status, and available financial resources, among others. After this careful review and discussion with the parent/guardian, we then may agree to cover some household expenses and/or illness related expenses, including, but not limited to the following: • Rent/mortgage, • Utilities (heat, electricity, telephone) • Food expenses • Ill child's medical expenses not covered by insurance • Medically necessary illness expenses such as eyeglasses, wigs, air conditioners, wheel chairs, even beds and mattresses • Travel to the hospital/clinic, covering mileage, taxi, etc. • Childcare for siblings and the ill child • Health insurance/COBRA We consider other financial assistance for which the family may qualify and will assist them in applying. Once we achieve the goal of stabilizing a family, our financial support may be reduced or, in some instances, may be increased depending on the child’s condition. The social workers stay in touch with their families so they can respond accordingly to their changing needs and the organization’s available financial resources. Friends of Karen’s financial assistance is dependent on many variables, but we are confident that our help is consistent and fair across the many families we support during their child's illness.

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. She succeeded brilliantly. For 41 years, Friends of Karen has been a beacon of help and hope to more than 16, 300 children (both ill children and their well siblings) in the New York Tri-State region, and their families. Our guide star is Sheila Petersen's oft-quoted maxim, "When the parents of a terminally or catastrophically ill child receive financial and emotional help, they then have more time to love..." 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. In 2018, we assisted 631 families, encompassing 586 ill children, 914 siblings (and bereaved families who continue to receive active support) with vital assistance. Friends of Karen has practiced for 40 years what has now been declared the standard of psychosocial care for pediatric cancer patients and their families. The importance of our work was reaffirmed in 2015 with the publication of “Standards for Psychosocial Care for Children with Cancer and Their Families.” This was a seminal moment for us. These standards confirmed that 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. These are the very issues Friends of Karen has addressed since its inception and it is gratifying to see the field has followed the path we blazed. 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 28-member staff – 17 full time and 11 part time – includes licensed, experienced and compassionate social workers, child-life specialists and expressive-arts therapists, as well as hundreds of volunteers who provide a wealth of services and support.

• Parents and children will have the support of an experienced team of professionals to guide them through their unpredictable journey with illness. • Parents will be able to take time from work to care for and nurture their children; and, will be able to pay their household/illness-related expenses when, due to the cost of the illness and loss of income, their own resources are in short supply. • Children battling a life-threatening illness will receive the medical care they need. • Well siblings will have reliable, consistent childcare – so that they won’t have to spend days on end with their family in hospitals and clinics – and can stay in school. • Siblings will be educated about their brother’s or sister’s illness; feel supported during the illness; be able to come to terms with their new family circumstances; and develop tools to use to reduce their risk of succumbing to such illness-related outcomes as negative social behavior and academic decline. • When families can pay their rent (and avoid eviction), feed their children, anticipate what to expect during the illness, and have some of their stresses and fears relieved, they will improve their chances of emerging from the illness with less debt, more dignity, a better sense of well being, and as contributing members of their community. • Families won’t have to face their child’s illness alone.

What started with one child in one family has grown rapidly. Today, Friends of Karen has served 6,669 ill children and 9,651 siblings = 16,320 children (thru 9.30.19) since the organization's inception Priorities for 2020 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 office, 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 will be integral to achieving the above. They determined these priorities through a focus group with Friends of Karen’s family support team of professionals, a survey of all staff, and an in-depth retreat among the Board of Directors. A sub-group of the Board is preparing a business plan to address each of these priority areas that will be presented to the full Board of Directors at their meeting in late March. Over the past year, Friends of Karen has intentionally strengthened its Board of Directors by adding six (6) new members, each with an area of expertise (in finance, technology, business, human resources and more) and leadership capacity that will support the growth and future success of the organization. Ultimately, our goal is to help more families that need our support and deepen services where there are no other resources available.