C.U.R.E. offers support to survivors of childhood cancer in many ways. We host virtual and in-person support groupsled by Parent Advocates for long-term survivors to connect and celebrate survivors every year at our annual Survivors’ Day Picnic.
Parent Advocate Program
The heart of C.U.R.E. Childhood Cancer Association is its Parent Advocate program. Certainly, C.U.R.E.’s outreach efforts, fundraising activities, research initiatives, and educational liaison efforts are all crucial to the organization’s mission of helping pediatric cancer and blood disorder patients. It’s the Parent Advocates, however, who are in the trenches, providing support of every stripe to family members as they voyage through treatment and beyond.
First established in the mid-1980s, the Parent Advocate program is ever-evolving to address the needs of patients and parents. Its latest effort, the C.U.R.E. Book Club, provides another way for family members to socialize and to shake off the stress, at least for a little while.
If you have a suggestion for an activity or service that you’d like to see offered by the Parent Advocate program, let us know! Please send suggestions to email@example.com or speak to any Parent Advocate or other volunteer.
Emotional and Social Support for Family Members
Support Groups: C.U.R.E.’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.
Advances in childhood cancer treatment and therapy have enhanced the long-term survival 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.
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.
Boost Tutoring Program
One of the many ways cancer takes its toll on young patients is by interfering with their education. C.U.R.E. helps in this area, as well, acting as a liaison between individual families and education professionals at the child’s school. This includes teachers, school administrators, and guidance counselors. Open communication channels help ensure that the patient’s unique educational needs are met, and that he or she does not fall behind in his or her studies while undergoing debilitating treatment like chemotherapy.
C.U.R.E. also offers Boost Tutoring, not just for patients who are currently in treatment, but for the entire duration of a student’s educational career. Volunteers with teaching experience help to “boost” the tutoring services offered by the school itself, or to fill in the gaps that are left when traditional schooling isn’t an option.
Agnes K. Mackey Memorial Fund
Established in 1986, the Agnes K. Mackey Memorial Fund was named to name one of C.U.R.E.’s most ardent supporters. To date, the fund has distributed over $500,000 to families struggling with the financial burden of chronic illness.
In addition to the aforementioned parking passes, as well as meal vouchers distributed to parents of children undergoing inpatient treatment, the Agnes K. Mackey Memorial Fund offers two other types of financial aid.
The Angel Fund, begun by past Board Chair Marc Johnson, extends short-term financial assistance for emergency home repair, utility bills, groceries and household items, and medicine co-pays. Families who are referred by a social worker at Golisano Children’s Hospital can also receive a grant of $500 toward funeral expenses for a pediatric cancer patient who has lost their battle with the disease.
The Lindsey Family
Cancer-free since 2018, Emilia and the Lindsey family still stay connected with C.U.R.E. and other families through events and special outings.
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.
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.
PTSD and Life After Cancer - Coping with cancer could put you at risk for port-traumatic stress disorder. Here’s how to recognize the symptoms and know when to seek help.
Learning Problems and Certain Childhood Cancer Treatments | What Educators Need to Know