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.
• Holding weekly Coffee Group meetings at the hospital allowing families to share their experiences and support each other.

    • 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
    • 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.

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. This assistance is made possible through the William and Mildred Levine Foundation.

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 D, 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:

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

The Ulman Cancer Fund for Young Adults | Scholarships for survivors and siblings.

Mesothelioma Cancer Alliance Scholarship | For students who have shown strength in the face of adversity and have been affected by cancer in any way in their life.

Finaid.org | Listing of scholarships for students with disabilities.

Aplastic Anemia & MDS International Foundation Scholarship

Leukemia & Lymphoma Society Scholarship | Listing of scholarships for survivors and siblings.

The Cord Blood Center| Information about cord blood banking.

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

School Resources:

How to Monitor Your Child’s Performance in School

Learning Problems and Certain Childhood Cancer Treatments | What Educators Need to Know

Navigating the Educational System

Computer Technology & Childhood Cancer Survivors

Range of Special Education Services

Test Accommodations and Modifications

Regents Diploma Flow Chart

Transition from High School | A Planning Time Line

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