Frequently Asked Questions
Who Is Karen?
Karen MacInnes was a 16-year-old girl from Westchester County who suffered from a rare genetic illness called Lafora’s Disease. Karen spent months in Mount Sinai Hospital, which exhausted her family’s insurance benefits and depleted their financial and emotional resources.
When Karen’s condition was finally diagnosed as terminal, her parents wanted to bring her home to spend her final days surrounded by family and friends – though at the time "at-home care" meant no insurance or government support. Sheila Petersen, a neighbor and close family friend, rallied the community through her caring and tenacity. Through newspaper articles and other outreach, she mobilized enough support to provide Karen with home care. Karen died in October 1979 at home, amid the warmth and love of her family.
After Karen’s death, Sheila Petersen was encouraged to continue her wonderful work, and thus Friends of Karen was born.
Friends of Karen incorporated as a 501(c)(3) nonprofit organization in 1983. See About Us for additional information.
What type of support does Friends of Karen provide?
Friends of Karen provides a range of financial, emotional and advocacy support for families living in the New York tri-state region who are coping with the catastrophic impact of their child’s life-threatening illness. Friends of Karen helps families with:
Emotional support, including supportive guidance, bereavement support, and Sibling Support Specialists.
Advocacy support, to ensure families have access to all available benefits from government and other agencies; support from other organizations; pro bono legal counsel; and help with special educational needs.
Financial support through payment of illness-related expenses not covered by insurance and basic living expenses that are no longer affordable when parents leave their job to care for their child.
Sibling support for the brothers and sisters of our ill children to help them cope with their own feelings and reactions as well as the changes within the family brought about by the illness.
The Family Support Services section provides additional information.
Who does Friends of Karen support?
Friends of Karen assists the families of a child (birth to age 21) who has been diagnosed with a life-threatening illness, is a U.S. citizen or lawful permanent resident, and lives in the New York metropolitan area. Please refer to the Guidelines for Family Assistance for more details.
How many children does Friends of Karen help?
Friends of Karen has provided assistance to more than 5,500 children with a life-threatening illness and their families in the past 36 years. When siblings are included, the organization has touched the lives of nearly 14,000 children. In 2014 alone, we helped 635 children and 990 siblings.
Why do you help the siblings of ill children?
Since our beginning, Friends of Karen has been dedicated to providing services tailored to the specific needs of each family -- and each family member. Parents of catastrophically ill children are simply overwhelmed by caring for their sick child. Our experience tells us that siblings have special needs because they do not understand the enormous changes in their family life.
Part of our aim is to strengthen support for these youngsters who are coping with their sister's or brother's illness. These children need to know that someone is listening, cares and can help. Through our Gifts for Children Programs, siblings know that they are never forgotten. Our Sibling Support Program helps siblings identify ways of coping with all the changes that take place within a family when a brother is sister is critically ill.
QUALIFICATIONS FOR ASSISTANCE
How do we qualify for assistance?
Please refer to the Guidelines for Family Assistance in the Family Support Services section.
If my child is being treated at a hospital in the New York metropolitan area but does not live there, are we still be eligible for assistance? Friends of Karen offers very limited assistance to families whose children do not reside within Friends of Karen’s guideline area. This determination is made on a case by case basis after the intake process with a Friends of Karen social worker. For more information, you can call (212) 308-1378 ext.3.
How does Friends of Karen determine financial need?
Families requesting financial assistance must demonstrate that the need is caused by the impact of the child’s illness. Parents are required to complete a financial application. After determining eligibility, a Friends of Karen social worker works closely with the family to create an individualized plan to address their specific needs.
How long will Friends of Karen support my family?
Friends of Karen’s assessment of each family’s situation provides for a customized support program over the course of the child’s treatment.
How do I apply for help?
Families should contact Friends of Karen directly at (212) 308-1378 ext.3.
RELATIONSHIPS WITH OTHER ORGANIZATIONS
Is Friends of Karen affiliated with a particular hospital?
No, Friends of Karen is not affiliated with any one hospital. We assist families whose child is being treated at a hospital located within our geographic guidelines.
Our social workers receive referrals from 25 area hospitals, including Memorial Sloan Kettering, Montefiore, Columbia Presbyterian, Yale-New Haven, Cohen Children’s Medical Center, and Westchester Medical Center.
Is Friends of Karen affiliated with any particular illness-based organization?
No, Friends of Karen is not affiliated with any illness-based organization, but we partner with many organizations committed to a variety of childhood diseases. These organizations include American Cancer Society, Leukemia and Lymphoma Society, Children’s Brain Tumor Foundation, and the Tom Coughlin Jay Fund Foundation as well as agencies providing hospice and palliative care. The Resources section provides links to other support service organizations.
What distinguishes Friends of Karen from other agencies helping children with a life-threatening illness?
Friends of Karen is the only organization in the New York tri-state area that provides vital, practical and comprehensive support, at no cost, to families caring for a child with a life-threatening illness. Friends of Karen is unique in its comprehensive intake and assessment; our recognition of the impact the illness has on each member of the family, and our programs to meet their individual needs; our ability to conduct in-home and hospital visits; and our willingness to provide critical support during the course of the illness.
Friends of Karen is a resource like no other. Our Family Support Services section provides specific details on our support programs.
FUNDING & DONATING
What are your sources of funding?
Friends of Karen funds its work through contributions from individuals, corporations, foundations, and government agencies. We rely on in-kind gifts of goods and services as well as proceeds from special events. The Annual Report provides information on our funding sources, expenses and revenues.
How do I know that my donation is going directly to help families caring for a child battling a life-threatening illness?
83 cents of every dollar we receive goes directly to our Family Support Programs. (65 cents is considered an acceptable standard.)
Charity Navigator, one of the largest and most respected independent evaluators of U.S. charities, has awarded a 4-star rating -- their highest award -- to Friends of Karen for six consecutive years. Only 2% of their 8,000 evaluated charities have achieved a 4-star rating for six or more years in a row. Our profile can be found at www.charitynavigator.org.
Friends of Karen is an Accredited Charity of Better Business Bureau (BBB) and a proud participant in the Charity Seal Program, which indicates that our organization has met the 20 rigorous standards for Charity Accountability. For more information about the Standards, please visit the BBB of Metro New York's website at www.newyork.bbb.org
I would like to donate at work. Do you participate in the United Way Workplace Giving Campaign?
Yes, we do participate in the United Way Workplace Giving campaign, but not all companies take part in workplace giving. Contact your HR department to find out and if your company does not participate, please contact Nancy Mariano, Regional Director, for more information.
I would like to donate items to Friends of Karen. What will you accept?
We are grateful for your donations of new items such as toys, school supplies and books. We do not accept donations of furniture, TVs or other electronics. Due to a sick child’s compromised immune system, we cannot accept used items. During the holidays you can participate in the Holiday Gifts for Children "Adopt-A-Family" program or donate gift cards so a family can enjoy a Thanksgiving meal together. Contact our Volunteer Coordinator Denise Tredwell or (914) 617-4052 to coordinate a gift-in-kind donation.
If I volunteered, would I be able to visit the children in the hospitals?
Due to the large geographic area that we serve, we currently do not have a volunteer program for in-hospital visits. However, there are many other ways that you can volunteer your time that will be a great benefit to Friends of Karen and the children we serve. If you have only one hour a month or ten hours, we always need help with wrapping birthday gifts, computer/office work or helping at one of our events. The Get Involved section of this website provides additional details, including a Volunteer Application.
My child would like to volunteer or conduct a “community service” project at Friends of Karen. How can I arrange this?
Community service and “children helping children” is one of the tenets which Friends of Karen upholds. We encourage independent community service projects and can suggest many opportunities year round. For example, children can collect school supplies, paper goods (diapers, paper towels, rolls of gift wrapping paper), or donate a portion of their birthday gifts. These are always needed by one of our families. Children can plan a tag sale, car wash or coin harvest collections at their school. In addition to our Holiday program, children can come up with their own ideas for confirmation or bar/bat mitzvah projects as well as scouting, youth group or club projects. For further ideas, see our Get Involved section, or contact our Volunteer Coordinator Denise Tredwell.
Have a question about Friends of Karen that isn't answered on this page? You can email us and someone will get back to you by the next business day. Your thoughts are very welcome.