Cutting 4 A CURE   

    5th Annual Fundraising Event to Benefit CURE Childhood Cancer Association  

About CURE Childhood Cancer Association

“Your child has cancer."

Families who hear those words live in a world transformed by disease. Daily life is filled with fear, confusion, stress, and emotion. No medical treatment can cure these afflictions. World-class medical care is available in the Rochester area, but patients and families need more than medical care to cope with chronic, life-threatening, and terminal childhood diseases. CURE is there to help and meet the very specific needs of families who are caring for a chronically ill child.  

 In 1976, a group of Rochester parents who lost their children to cancer along with several local doctors formed an organization called CURE Childhood Cancer Association. It was their belief that it was important that more help be provided to families of children that are diagnosed with cancer. They determined that during this time families needs included; Counseling, Understanding, Resource and Education. Out of these beliefs CURE Childhood Cancer Association was born. Since then, CURE has become a model for other childhood cancer groups around the nation. CURE publishes a Parent Child Handbook. This book, is designed, and serves as, a comprehensive guide for parents as they confront the many aspects and treatments of childhood cancer. Topics covered in the handbook include therapies, drugs and their side effects as well as a guide to the hospital and medical staff. This handbook has been expanded over the years and now includes community resources as well as informative Internet sites. In the mid 1980s, CURE developed the Parent Advocate Program. Working closely with Golisano Children's Hospital at Strong, guidelines were developed for a position to be filled by a parent of a child who had had cancer. Today, CURE?s Parent Advocate program is a nationally recognized model and is used by others to train parent advocates across the country. CURE then expanded its outreach and services to include working with hospitalized children and schools to assure a smooth transition in and out of school while the child undergoes treatment. CURE's educational liaison program now assists families in the developmental and educational needs of children during and after treatment. As cancer treatments have become increasingly effective, more children survive into adulthood. A major part of CURE's mission now involves working with cancer survivors, providing them with resources that will educate them so that they are able to maintain their health and independence, often in the face of recurring health issues. As part of this outreach program, CURE publishes Voyages: A Map to Survivorhood, a guide that informs children and families on the many issues of long-term survivorship. CURE has evolved over the last 35 years. But one thing that has not changed is their commitment to families and children from in and around the Rochester area who are facing the effects of childhood cancer.

Cure is a nationally recognized innovator in peer to peer support for families with children diagnosed with cancer and blood disorders. For over 35 years, CURE has been the forerunner in developing the concept of parent advocacy, long-term educational assistance and peer-to-peer support. CURE encourages and assists children, young adults and their families in Rochester and the surrounding region to realistically face diagnosis and treatment, cope with their fears, and believe in the possibility of life after cancer.
CURE Childhood Cancer Association was formed years ago by a group of parents who lost their children to cancer. They wanted to provide support to families going through the same experience, as well as raise money for cancer research. Today, CURE is the only organization in Rochester focused solely on meeting the emotional, social, financial and educational needs of children diagnosed with cancer and chronic blood disorders.

CURE's Mission:

  Improving the lives of children and their families coping with childhood cancer or chronic blood disorders by providing emotional, educational, social and financial assistance; promoting and funding research toward a cure.

CURE's Services:

When a child is diagnosed with cancer, parents immediately feel overwhelmed. While that feeling never really leaves, CURE tries to help parents shoulder the enormous burden under which they find themselves. With programs like the Parent/Child Handbook, Educational Advocate and CURE Parent Advocate, CURE lets parents know they are not fighting cancer alone.

Parent Support: Throughout the year, CURE offers educational programs that address the areas of interest for families who have had a child in treatment for cancer or blood disorders. These programs are typically held in the Mark Dillon Friends and Family Room in CURE's office located at 200 Westfall Road, Rochester NY. Childcare is typically available with an advance reservation. Information about events is posted on CURE's calendar of events, and periodic mailings are sent to families.

Bereavement Support Group: Each month, this group meets in the Mark Dillon Friends and Family Room. This group is specifically designed for parents and family members who have lost a child to cancer. Led by a trained social worker as well as parent volunteers, this is a opportunity for families who have lost their children to talk openly about the loss of their child and to receive support. All support group meeting times and places will be posted on the CURE's calendar.

Family Events: During the year, CURE holds many events for families of children with cancer. Events vary and include an annual Holiday Party, an Annual Cancer Survivors Day Celebration and a Fall Fun Day. Each September, a Remembrance Ceremony is held in our Children's Memorial Garden to celebrate the lives of the children we've lost. These events help families know that they are not alone.

Coffee Hour: Each Thursday at 1:00 pm, CURE holds coffee hour in the Kaiser Room located on the 4th floor of Golisano Childrens Hospital. Coffee hour offers families whose children are currently in treatment or recently off treatment an opportunity to meet and share their thoughts and experiences.

Agnes K. Mackey Memorial Fund: The Board of Directors of CURE established the Agnes K. Mackey Memorial Fund in 1986, in memory of Agnes. K. Mackey. Mrs. Mackey was a strong supporter of CURE who had a wonderful gift for making people feel special. The fund was developed to provide families with financial assistance. A child's cancer diagnosis can create a financial burden for a family. Often parents have to take a leave of absence from work without pay at a time when they are overwhelmed with enormous expenses. The Agnes K. Mackey Fund is available to those with demonstrated need without the wait or red tape associated with other assistance programs. Grants have been awarded to help with requests for such expenses as utility bills, co-pays for medication and funeral costs. Since it was established, the Agnes K. Mackey Memorial Fund has distributed over $425,000.00 to families in need of financial aid.

Parking Stickers: CURE budgets more than $23,000 annually to help each and every family who is fighting childhood cancer cover their parking expenses while visiting their child in the hospital. When a child is hospitalized, parents are provided with parking vouchers for as long and as often as their child is an inpatient. Parking passes are ditributed to each child undergoing outpatient treatment as well. In addition, a parking voucher is provided to parents during each outpatient/clinic visit. The parking voucher program has been an enormous source of financial relief as hospitalizations can often last a month or longer, creating a huge financial burden for many families. CURE's parking program saves families over $85,000.00 annually.

CURE's Parent Advocate Program: The Parent Advocate program has been in place for since 1986. Carol Vattimo, CURE's Parent Advocate, is a full-time CURE employee working in the hospital. As a parent of a long-term survivor, she is uniquely qualified to help parents cope with their child's diagnosis, illness and treatment. Beginning immediately with diagnosis, Carol meets with families to help them understand the many aspects of cancer treatment. She meets with many families of inpatient children daily as well as with outpatients during clinic visits. Carol is one of the few constant presences in their lives while their child is in the hospital or on treatment.

CURE Comfort Kits: The Parent Advocate provides each new family with a CURE Comfort Bag. These bags contain the Parent/Child Handbook, a "Comfort Kit" with toiletries for an overnight stay, a blanket, teddy bear and other items to help them and their child through those first difficult hours and days.

Julie Roberts Children's Memorial Garden at CURE: The Julie Roberts Children Memorial Garden was established in 2003 at the CURE offices located at 200 Westfall Road. The site of the annual Remembrance Service held every September, the garden is a memorial to the children who died of cancer or blood-disorders. Engraved bricks line the walkway, with the names of children who are never forgotten.

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