C.U.R.E. Childhood Cancer Association
Embracing Families at Every Turn
Programs and results
What we aim to solve
When parents hear the words "Your child has cancer" or "Your child has a chronic blood disorder", their worlds go blank. It is the mission of CURE Childhood Cancer Association to help parents meaningfully get through a diagnosis and treatment. Many issues arise with a childhood cancer or chronic blood disorder diagnosis, including increased financial burden, emotional stress and educational worries. We, as an organization, are committed to advocating for parents and providing the various support that is needed. We aim to alleviate burdens from parents so they can care for their child and families throughout treatment and beyond.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Parent Advocate
Our Parent Advocates provide emotional support for all of CU.R.E.’s families while at the hospital for both inpatient and outpatient services. The Parent Advocates serve as C.U.R.E.’s representatives in the hospital and promote awareness of the organization and its programs, as well as promoting understanding of childhood cancer and its treatments. The Parent Advocates work closely with the hospital’s Social Worker to connect families to the organization, and each other. Additionally, our Parent Advocates provide firsthand experience emotional support; as one of the main requirements of the position is that they are a parent who has had a child that is a childhood cancer survivor.
Social Events for Families
We provide free social events for our families multiple times per year: Survivor's Day Picnic (June), Family Fun Day (July), Family Fun Day (September), Holiday Party (December)
Phillip's Gift Palliative Care Program
Phillip’s Gift is a pediatric palliative care program offered by C.U.R.E. Childhood Cancer Association and serviced through CompassionNet, a part of Lifetime Care. This program, unique to Rochester, offers seriously ill children and their parents the ability to elect to undergo treatment at home, while alleviating pain and suffering and keeping families in the comfort and familiar environment of their home. 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.
Voyage Beads
C.U.R.E. 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. Siblings of children with cancer also have unique experiences as a result of their sibling's treatment. In an effort to be inclusive of the whole Family's experience, C.U.R.E. now offers Voyage Beads to Siblings, as well, with beads being offered to siblings for different experiences such as shaving their head in solidarity with their sibling on treatment or being a bone marrow donor to their sibling.
Agnes K. Mackey Fund
The Board of Directors of C.U.R.E. established the Agnes K. Mackey Memorial Fund in 1986, in memory of Agnes. K. Mackey. Mrs. Mackey was a strong supporter of C.U.R.E. 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 C.U.R.E. 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 C.U.R.E. to distribute parking vouchers for the Strong Memorial Hospital Garage to every patient in both inpatient and outpatient areas of the Pediatric Hematology/Oncology Department. Meal vouchers are also distributed to parents who have a child staying in the inpatient area of the hospital. It is C.U.R.E.’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.
Bereavement Services
Funeral Assistance:
Upon the referral of the social worker in the Pediatric Hematology/Oncology Department at Golisano Children’s Hospital, C.U.R.E. offers a $500 - 2,500 grant to each family who loses a child to cancer or chronic blood disorder. We at C.U.R.E. 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.
Bereavement Support Group:
A support group for parents and family members who have lost a child to cancer is led parent volunteers and co-facilitated by one of our parent advocates, this is a place where parents may talk openly about the loss of their child and receive peer to peer support.
Bereavement Meetings are held at C.U.R.E. from 7-8:30 pm on the 1st Wednesday of each month.
C.U.R.E. Resource Library furnished by the John F. Wegman Fund
The C.U.R.E. 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. Every family who experiences a loss is sent Tear Soup: A Recipe for Healing After Loss by Pat Schwiebert. Additionally, we have multiple copies of Life After the Death of My Son: What I’m Learning by Dennis L. Apple in addition to many others.
The Julie Roberts Children Memorial Garden at C.U.R.E.
The Julie Roberts Children Memorial Garden was established in 2003 at the C.U.R.E. offices located at 200 Westfall Road. 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. These bricks are provided by C.U.R.E. to our C.U.R.E. families who have lost a child to cancer.
Brick Laying Ceremony
Each year in the spring, parents, family and friends are invited to a special ceremony to remember and celebrate the precious lives of children lost during the calendar year as we place their memorial bricks in the Julie Roberts Memorial Garden located at the CURE office at 200 Westfall Road, Rochester, NY 14620.
Educational Assistance
C.U.R.E. 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. C.U.R.E.’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.
Postage
C.U.R.E. sends out Birthday cards annually to each C.U.R.E. child until the age of 17. Additionally, C.U.R.E. sends out cards to parents on the anniversary of their child's death to let them know we are thinking of them.
Parents' Night Out
C.U.R.E. would like to give parents the opportunity to connect outside of the hospital walls and establish relationships with each other. Our goal is to create a deeper peer support system. Our monthly outings vary in activity and day of the week and are opportunities for our Parents to get out of the house, have some fun and connect with other Parents.
Where we work
External reviews
Photos
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
CURE Childhood Cancer Association would like to be a family's go-to support system when their child is diagnosed. We want to provide support to help ease the troubles of the family during their darkest days. We also want to alleviate the burden families suddenly feel themselves under when their child is diagnosed.
What are the organization's key strategies for making this happen?
CURE intends on continuing to expand our Parent Advocate program, assessing where unmet needs are and determining how we can fulfill those needs.
What are the organization's capabilities for doing this?
CURE Childhood Cancer Association has the staffing in place to accomplish the goals we have set forth for ourselves. We are positioning ourselves within the community, generating awareness for the cause and our organization and keeping the needs of our families in the forefront of our minds.
What have they accomplished so far and what's next?
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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Which of the following feedback practices does your organization routinely carry out?
We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We act on the feedback we receive
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What challenges does the organization face when collecting feedback?
It is difficult to get the people we serve to respond to requests for feedback
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
C.U.R.E. Childhood Cancer Association
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Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
Disability
Equity strategies
Last updated: 01/31/2023GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.