Parent Advocate Program

Through the work of our Parent Advocates, 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.

    • 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

Parent Support Groups
Every other Wednesday, CURE’s Parent Advocates host a Facebook Live session at 12 PM that can be accessed by anyone on Facebook – including families who are inpatient, outpatient or even long-term survivors. They cover topics ranging from meeting hospital staff to handling a pediatric cancer diagnosis to how to handle losing a child. An Outpatient/On Treatment Support Group occurs at the CURE office (200 Westfall Road) the 2nd Wednesday every month from 12 – 1. RSVPs are not required. A Long-Term Survivor Support Group occurs at the CURE office (200 Westfall Road) the 4th Wednesday every month from 6:30 – 8PM. RSVPs are not required.

Parking Passes
CURE provides parking passes to help each and every family who is fighting childhood cancer or chronic blood disorder so they never have to worry about parking when visiting their child in the hospital or attending essential appointments. 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 $60,000.00 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

Educational Assistance

Advances in childhood cancer treatment and therapy have enhanced the long-term survival and rate of children that have been diagnosed with cancer.  However, research confirms that various cancers and their therapies often adversely affect a child’s educational development and functioning.

CURE helps to coordinate the varied educational needs of students into a cohesive program. This includes working with teachers, guidance counselors and school administrators in order to insure that the special educational needs of cancer patients are met. CURE’s goal is to insure that a child’s educational needs are met both while undergoing treatment and after treatment ends.

We work closely with parents to help them navigate their child’s return back to school as well as any educational deficits they may be experiencing. Through our Education Liason consultant, parents can have a professional review their child’s records and make suggestions about testing and referral services to meet the child’s educational needs. In addition, we work closely with parents to talk to teachers, administrators and other educators to help them understand a child’s learning limitations during and after treatment and then implement support services when needed.

We also work to coordinate free supplemental tutoring for children who need additional help with school work but who no longer qualify for tutors provided by the school district through a program supported by CURE called BOOST.  BOOST uses both current and retired teachers who work with students helping them better understand the material being presented at the child’s grade level and keep the student on track academically.

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.

Angel Fund:
The Angel Fund was established by past Board Chair, Marc Johnson, and serves as emergency assistance funding for families who are currently undergoing treatment or find themselves in need shortly after. A cancer or chronic blood disorder diagnosis can be devastating (both financially and emotionally) and CURE does what we can to alleviate these burdens.

Funeral Assistance:
Upon the referral of the social worker in the Pediatric Hematology/Oncology Department at Golisano Children’s Hospital, CURE offers a $500 grant to each family who loses a child to cancer or chronic blood disorder. We at CURE understand that families may financially struggle to pay for after life services and we want to ensure we do what we can to help these families.

Phillip’s Gift – Pediatric Palliative Care Program

PhillipsGift-148x250Phillip’s Gift is the pediatric palliative program offered by CURE Childhood Cancer Association and serviced through CompassionNet, a part of the Lifetime Health Association. This program, unique to Rochester, offers assistance to the families of seriously ill children and concentrates on alleviating pain and suffering and keeping families who elect to undergo this treatment at home the ability to do so. This service goes to the very core of CURE’s philosophy: no parent, child or family should have to go through this disease alone.

Through this program, health and related occupational professionals provide families and caregivers the resources to sustain effective coping skills and facilitate positive family dynamics.

Input from a team of physicians, pharmacists, nurses, chaplains, social workers, psychologists, child-life specialists, therapists and other allied health professionals is considered when formulating a plan of care to relieve a patient’s suffering. The goal of this program is to improve the quality of life for both the child and the family and to develop a support system to help the child live as actively and comfortably as possible. In addition, the program creates a support system that will help to sustain and rehabilitate the child’s family as well as provides long-term bereavement services for the family.

Families are selected to participate in this program after consultation with both the child’s oncologist and the staff at CompassionNet. Once enrolled in this program, the family and patient receive palliative care services for as long as required – all at no cost to the family.

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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

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.

Resources:

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.

Children With Hair Loss  – They provide wigs and a hat to a child who has experienced medical hair loss.

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