Frequently-Asked Questions

About Us

Qualifications for Assistance

Relationships with Other Organizations

Funding / Donating Volunteering

ABOUT US

Who Is Karen?

Karen MacInnes was a 16 year old child 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-home care meant no insurance or government support. Sheila Petersen, a neighbor and close family friend, rallied the community through her caring and tenacity. She mobilized enough support to provide Karen with round-the-clock care for 11 months, until 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 comprehensive 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 in many important ways.

• Emotional support through our experienced team of social workers who support and guide all members of the family.
• Advocacy support including assistance securing benefits from government and other sources, referrals to other agencies and pro bono legal counsel.
• Financial support for living expenses (such as rent and utilities), uninsured medical expenses and co-payments for the child, travel expenses to and from medical appointments, supermarket gift cards, and more for families who demonstrate financial need.
• Bereavement support to surviving parents and siblings including assistance with funeral arrangements and expenses; monthly parent support groups; bereavement literature. 
• Sibling support for the brothers and sisters of our ill children to help them cope with the effects of changes within the family when their sibling is diagnosed.

The Family Support Services section will provide additional information.

Who does Friends of Karen support?
Friends of Karen assists to the families of children through age 21 who have been diagnosed with a life-threatening illness, are U.S. citizens, and live in the New York metropolitan area. Please refer to the Guidelines for Family Assistance for specific information.

How many children does Friends of Karen help?
Friends of Karen has provided assistance to 4,000 critically ill children and their families in the past 30 years. When siblings are included, the organization has touched the lives of 10,000 children. In 2008 alone, we helped 500 children and 785 siblings.

Why do you help the siblings of ill children?
For the past 30 years, Friends of Karen has been dedicated to preventing the collapse of families by caring for the children diagnosed with a life-threatening illness and providing support to the entire family. Our experience tells us that the siblings have special needs and are often left out. Parents of catastrophically ill children are simply overwhelmed by the turmoil surrounding them and consumed by caring for their sick child.

These children need to know that someone is listening, cares and can help. Through our Gifts for Children Programs, siblings will know that they are never forgotten. With our Sibling Support Program the goal is to help 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. Contact us at shelaghmclean@friendsofkaren.org.

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, Friends of Karen’s social workers work closely with each family to create an individualized plan to address their specific needs.

How long will Friends of Karen support my family?
Friends of Karen’s unique 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 our toll free number 1-800-637-2774 or e-mail us at shelaghmclean@friendsofkaren.org for further information.

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 sorkers receive referrals from 25 area hospitals, including Memorial Sloan Kettering, Montefiore, Columbia Presbyterian, Yale-New Haven, Schneider Children’s Hospital (North Shore – LI) and Westchester Medical Center.

Is Friends of Karen affiliated with any particular illness-based organization?
No. Friends of Karen is not affiliated with an 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 and 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 catastrophically ill children?
No other organization in our geographic area provides the depth and breadth of services that Friends of Karen does. Friends of Karen is unique in its comprehensive intake and assessment; our recognition of the impact the illness has on the entire family and our development of programs to meet the need; our ability to conduct in-home and hospital visits; and our willingness to provide critical support during the course of the illness. Our Family Support Services section provides specific details on our comprehensive 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 critically ill children and their families?

81 cents of every dollar we receive goes directly to our Family Support Programs.

Friends of Karen is proud to have been awarded the 4 star rating by one of the largest and most well respected independent evaluator of charities, Charity Navigator.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 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 and if your company does not participate. Please contact Jill Gold, Communications Coordinator at jillgold@FriendsofKaren.org, for more information.

I would like to donate items to Friends of Karen. What will you accept?
Due to a child’s compromised immune system, we do not accept used items. We are grateful for our donations of new items such as toys, school supplies and books. We do not accept donations of furniture, TVs or other electronics or cars/trucks.  Please refer to our Wish List for items that our families currently need. During the Holidays you can participate in the Adopt-A-Family Holiday gift program, as well as donate food items for Thanksgiving Baskets. Contact our Volunteer Coordinator, Denise Tredwell at denisetredwell@friendsofkaren.org or at 914-61704052 to coordinate a gift-in-kind donation.

VOLUNTEERING

If I volunteered, would I be able to visit the children in the hospitals?
No, 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. 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. Get Involved will provide 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 “kids helping kids” is one of the tenets upon Friends of Karen was built. We encourage independent community service projects and can suggest many opportunities year round. For example, children can collect school supplies, paper good (diapers, paper towels) and rolls of gift wrapping paper. 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 project, children can come up with their own ideas for confirmation or mitzvah projects as well as scouting programs. For further ideas/information on Get Involved contact our Volunteer Coordinator, Denise Tredwell at denisetredwell@friendsofkaren.org.

Additional questions can be e-mailed to the General Information mailbox at info@friendsofkaren.org.