Parent Advocate Program

Through the work of our Parent Advocate, staff and devoted volunteers, CURE offers families a wide range of emotional support and care by:
• Helping families understand their child’s diagnosis and acting as their liaison to medical and psychosocial staff.
• Providing comfort and support through visits with patients and families who are hospitalized or at the Outpatient Clinic / Treatment Center.
• Supplying a CURE Tote Bag filled with comfort items for newly diagnosed patients and their families.
• Holding weekly Coffee Group meetings at the hospital allowing families to share their experiences and support each other.

    • Providing passes for free parking at the hospital when a child is hospitalized or has an appointment at the Pediatric Hematology Oncology Outpatient Clinic / Treatment Center.
    • Delivering CURE’s Patient/Parent Organizer, a tool to help newly diagnosed patients and caregivers keep track of vital information about the patient’s illness and treatment

How We Help

CURE’s Voyage Beads
CURE Voyage Beads are a visual way for children to record their voyage through cancer treatment. Beads of
various colors and shapes, each representing a particular treatment or procedure, are strung on a necklace. For example, the red bead represents a blood transfusion while a white bead represents a chemo treatment. Children will add beads as they go through treatment and will build a tangible documentation of their journey.

How do CURE Voyage Beads work?
The Voyage Bead program is a voluntary program and children who wish to participate in the program will be given a length of string or cord strung with beads that spell their first name. Colored beads representing treatments and procedures will be available to add to the necklace.

click here to download our Voyage Beads guide

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.

Parent Support Group
Each Tuesday at 1:00 pm, CURE hosts a support group in the CURE Conference Room on 7 North at Golisano Children’s Hospital.  This group offers families whose children are currently in treatment an opportunity to meet and share their thoughts and experiences.

Parking Passes
CURE budgets more than $20,000 annually to help each and every family who is fighting childhood cancer or chronic blood disorder 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.

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 up to $85,000.00 annually.

CURE Resource Library furnished by the John F. Wegman Fund
The CURE Office is home to many books and resources that are free for our families to use. We have books available for families to take home and read, some to keep and some to borrow. We have a wide selection of books in which we have one or two copies of. We have multiple copies of the following books:

Learning to Dance in the Rain by Rachel A. Ormsby

I Want to Grow Hair, I Want to Grow Up, I Want to go to Boise by Erma Bombeck

Young People With Cancer; A Handbook for Parents

Chemo, Craziness and Comfort by Nancy Keene & Trevor Romain

Helping to Heal by Patti Wood

Perfect Vision: A Mother’s Experience With Childhood Cancer by Sharon Higgins Brunner

Purpee the Purple Dragon and the Stone-Eyed Snake by Anthony Fasano & Brianna Fasano

Oliver’s Story: For ‘Sibs’ of Kids with Cancer by Michael Dodd

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 families being served by CURE and who are treated at Golisano Children’s Hospital who demonstrate a need. Grants are submitted by the social worker at the hospital and approved as soon as possible, without the wait or red tape associated with other assistance programs. In the past, grants have been awarded to help with requests for such expenses as utility bills, groceries, co-pays for medication and funeral costs. This fund also allows CURE to distribute parking vouchers for the Strong Memorial Hospital Garage to every patient in both inpatient and outpatient areas of the Hematology/Oncology Department. Meal vouchers are also distributed to parents who have a child staying in the inpatient area of the hospital. It is CURE’s mission to make sure the parent(s) is/are taken care of to the best of our ability so they can care for their child.

Since it was established, the Agnes K. Mackey Memorial Fund has distributed over $500,000 to families in need of financial aid.  Please contact your social worker about requesting a grant from the Agnes K. Mackey Memorial Fund.

BOOST Tutors

Boost provides supplementary tutoring for children with cancer and other chronic diseases, which may prevent normal educational development.

“My daughter Morgan is a patient at Strong and has been struggling academically. We were given Linda Bolan’s name at Boost for tutor services. We could not believe that their services were free! We had tutors for a few subjects, and having someone teaching her one-on-one made such a difference. She was able to focus better and participate with her teacher in a positive way. I received a follow up phone call from Linda and we are going to schedule more tutoring for her over the summer! I truly believe that Morgan learned so much from the teachers at Boost. It was just the “boost” she needed to get her up to speed at school. Thank you to all the volunteers for offering your services and time to help others.”

Linda J. DeMatteo, parent

Family Events

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Survivors Day – This event honors all of our survivors at a family picnic.  Every survivor receives a t-shirt and there are many games and activities as well as picnic fare.  This event is open to all of our survivors and their immediate family.

Morton Fun Day – This fun event is put on by the parishioners of the Baptist Church in Morton NY for CURE families. Lunch is provided as well as pumpkin and apple picking and many fun activities.

CURE Holiday Party – This event is co-hosted by BENTE and is open to CURE children 16 and younger and their immediate families.  The event provides dinner and a magic show, as well as other fun games and activities, and a visit from Santa with a gift for every child.

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Resources

American Childhood Cancer Organization – Advocacy organization that provides free books and materials targeted at parents, young patients, siblings, educators, and caregivers.

Children’s Oncology Group (COG) ­- National Cancer Institute supported clinical trials group devoted exclusively to childhood and adolescent cancer research.

CureSearch – Funds and supports children’s cancer research and provides information and resources.

Leukemia and Lymphoma Society – Funds blood cancer research and provides information and support.

American Cancer Society – Information about diseases, treatment and support.

Livestrong (Lance Armstrong Foundation) – Information and resources for support.

National Cancer Institute -­ Federal Government’s principal agency for cancer research. Information about cancer diagnosis, treatment and continuing care.

Starlight Children’s Foundation – Educational online programming to help sick children understand common hospital procedures and manage illnesses such as cancer.

Gilda’s Club – Social and emotional support supplemental to medical care.

Bite Me Cancer – Funds thyroid cancer research and provides information and support. Resources for teens dealing with all cancers as well.

Make a Wish Western & Metro New York – Wish granting organization that services children with life-threatening medical conditions.

CaringBridge – Free personal web site used by many parents to chronicle and communicate their child’s journey.

National Cancer Institute – A website titled Young People with Cancer: A Handbook for Parents.

Cancer in young adults | In Their Own Words: After a Diagnosis, Adolescents and Young Adults with Cancer.

Childhood Cancer Guides | A nonprofit that publishes books to help families of kids with cancer and survivors of childhood cancer.

Colburn – Keenan Foundation, Inc. – A charitable organization that supports students with blood disorders through a designated scholarship program for higher education.

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