Nancy Mariano has been the Regional Director for , an organization located in Port Jefferson for nearly ten years. Prior to her work at , Mariano was the executive director for Special Olympics and involved with them for over 30 years.
has been dedicated to helping families of critically ill children. Mariano sat down with the Port Jefferson Patch to share with us mission and how the community can lend a hand in the work they do.
Can you tell us how Friends of Karen began?
Friends of Karen was started in Westchester 33 years ago, when a young girl named Karen was dying in a hospital and she wanted to come home. She wanted to spend her last days, months, at home. After her parents mortgaged their home–just about sold their soul–it still wasn’t enough to make the house accessible or medically correct for Karen. A neighbor went door to door collecting money–a lot of money back then–and Karen was able to spend the last 11 months of her life in the comfort of her own home.
When Karen did pass away there was money left over and that is when Karen’s family decided that money should be used for other parents or families that had children that had a life threatening illness.
How do the families generally come in contact with Friends of Karen?
The family is diagnosed in the hospital and the hospital will tell them about Friends of Karen and then they will call us. Ninety percent of all our referrals come from the hospitals. We have a part time English speaking social worker and a full time bilingual social worker. You can imagine the family that is going through the horrors of just being diagnosed with a life threatening illness and then they can’t speak to anyone in their native language.
You offer financial help as well as emotional?
We don’t want to be known as just paying bills, even though we spend approximately $100 - $125,000 a month on medical bills or related. We pay for things like utilities, rent, car payments, telephone, lights, medical related co payments, transportation to doctors and treatments, child care for siblings while the parent or parents are in the hospital with their sick child.
The simplest cancer is three years of treatment. No matter what financial status they are in it isn’t going to matter, your whole life will be upside down. We want to keep the family stable. It's so important for people to realize we aren’t just about paying the bills. We always say cancer is to big to do alone, to try and do this yourself. There is no reason too. Our social workers work with the family and the hospitals social workers to make sure that we are taking care of that family in the best possible way, together.
Has the state of the economy affected the support you're able to provide?
We have wonderful supporters. Even with the economy in our 33 year history last year was our highest revenue year. Our budget is four million dollars, we can’t tell the cancer to go away there's a recession. We don’t even talk about it.
You also do a lot of work for the siblings involved?
When you have a child that is so sick, your focus isn’t on the siblings, its just the way it is. And we have had siblings drop out of school and worse. We are being asked by the hospitals to take that role since their social workers don’t leave the hospital and ours are in the home. The siblings sacrifice so much, people don’t realize.
What can the community do to get involved and help?
Right now we need school supplies. Back to School for the fall. We are starting to work on it now. If a family is at the hospital they aren’t aware school is starting they don’t know. So we take care of that for siblings. School supplies can be dropped here at our office until the beginning of August.
Also when it is a child’s birthday or siblings we always send presents. They have to be brand new toys, we have to be able to clean them for health reasons. We always need gift cards for the older siblings that is ongoing, we are always looking for gift cards. Another way the community can help, we always have events we need volunteers, and we need office help throughout the year always. And at Christmas we do a holiday adopt program as well.
For more information on how you can volunteer or contribute to s Mission please see their website.