The support doesn’t stop when treatment stops. C.U.R.E. offers support to survivors of childhood cancer in many ways. We host virtual and in-person support groups led by Parent Advocates for long-term survivors to connect and celebrate survivors every year at our annual Survivors’ Day Picnic.

THE 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 staff@curekidscancer.com or speak to a Parent Advocate or other volunteer.

Emotional and Social Support for Family Members

Emotional and Social Support for Family Members

Parents’ Night Out: When a close family member is undergoing treatment, it can sometimes seem as though your entire existence has been overtaken by Cancer-with-a-capital-C. It’s all you talk about and think about; no matter what else is happening on the surface, cancer continues to beat like a bass line underneath it all.

Parents’ Night Out provides a respite from this constant, all-consuming subject. Even a few hours away from the hospital can allow a parent the space to breathe and the chance to recharge. Previous outings have included kayaking trips, ice-skating excursions, Red Wings games, haunted hayrides, escape-room experiences, painting parties, and more. Parents can slough off the stress for a little while, share some laughs, and return to their child’s bedside with renewed energy and equilibrium.

Grandparent Connections: C.U.R.E. recognizes that grandparents are more active in the lives of their grandchildren in today’s world. We see the toll a diagnosis takes on the grandparents, who are seeing the affects of these diseases both on their grandchild and their child. Our goal is to create a support network for our Grandparents to ask questions, lean on each other and build a community. Currently, we set up meeting times quarterly for Grandparents to meet and chat and have a morning beverage together. We hope to continue to grow this program.

Educational Assistance

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.

“OUR PARENT ADVOCATE CONTINUES TO CHECK IN ON US”

— Lyndsay Lindsey

Resources

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

The Brian Morden Memorial Scholarship - Scolarships for survivors and siblings.

Cancer for college - Scholarships for high-achieving cancer survivors.

The Izzy Foundation - Scholarships for current pediatric cancer patient’s, a childhood cancer survivor, and/or a sibiling under the age of 25 (bereaved siblings are welcome to apply).

The John Foy and Associates Strong arm Leukemia Scholarship - Scholarship that will be awarded to a college student who has battled Leukemia or whose life has been affected by it.

Kids 4 Kids with cancer - Scholarship for those who were diagnosed with cancer before their 18th birthday.

SOAR to college Scholarship - For cancer survivor’s or currently diagnosed.

Patient Advocate Foundation Scholarship - For those who have been diagnosed with or treated for cancer or chronic disease.

Northwestern Mutual Childhood Cancer Survivor Scholarship - Scholarship for cancer survivor’s.

Northwestern Mutual Childhood Cancer Sibling Scholarship - Scholarship for siblings.

Pediatric cancer research foundation Scholarship - For survivors of pediatric cancer.

Michael A. Hunter Memorial Scholarship - For Leukemia/Lymphoma patients and survivors.

Mary Barton Freeman Scholarship - For those who have been impacted by cancer, including siblings.

TRCF Scholarship - For a cancer survivor or currently receiving cancer treatment.

The Cure cancer support Scholarship - For those diagnosed with cancer in their childhood.

NCCF Scholarship - For cancer survivor’s or current patients.

Bristol Myers Squibb Scholarship - For cancer survivors.

Sofia Blanco Scholarship - For childhood cancer survivors, or currently diagnosed with a childhood cancer.

Gabriela Blanco Scholarship - Scholarship for siblings.

Andre Sobel river of life Foundation - Give a gift to help with financial assistance to single caregivers of seriously ill children for urgent expenses.

Beth Carew Memorial Scholarship - Must be diagnosed with hemophilia, von Willebrand disease, or a related inherited bleeding disorder.

Beyond the Cure Ambassador Scholarship - For childhood cancer survivors or a high grade ir anaplastic brain tumor.

Mesothelioma.com 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.

HPFY Beyond Disability Scholarship - For anyone living with a documented disability.

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

Candice’s Sickle Cell Fund, Inc. - For students with sickle cell disease who are pursuing higher education.

The Paradise Scholarship - An education-based scholarship for individuals living with sickle cell disease.

The International Association of Sickle Cell Nurse and Physicians Assistants, Inc. - For individuals living with Sickle Cell Disease who will be attending an institution of higher learning in the United States.

The Cyntra D. Scott Scholarship - Applicants must have sickle cell disease, be 26 and older.

disABLEDperson, Inc. National Scholarship - For college students with disabilities.

The John Lepping Memorial Scholarship - Students must have one or more disabilities, including, but not limited to physical conditions and psychological conditions.

Jack Scura Fund - Applicant must have any kind of disability.

SCTPN Undergraduate Scholarship - For children and young adults living with sickle cell/and or thalassemia, for their scholastic achievements.

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.