C.U.R.E. Childhood Cancer Association is there for newly diagnosed families. A diagnosis can often come with burdens that aren’t planned for; our programs and staff are here for you every step of the way and help to alleviate your worries.

Parent Advocate Program

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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 adella.ivison@curekidscancer.com or speak to any Parent Advocate or other volunteer.


Practical and Financial Help for Newly Diagnosed Families

It’s no secret that the cost of medical care in the United States is exorbitant, even with health insurance. To help offset a fraction of the expense, C.U.R.E. provides each newly diagnosed family with a $100 gas gift card as well as parking passes for both hospital stays and visits to the Pediatric Hematology Oncology Outpatient Clinic and Treatment Center. As long as their child is in treatment, no matter how many times they come and go during a hospital stay, parents will be able to park for free. 

The parking program can save families up to $60,000 annually. What’s more, it means one less worry for parents who are already overwhelmed and stressed.


Other Ways We Help

Comfort Kits: C.U.R.E.’s comfort kits have been described by grateful moms and dads as “a hug in a bag.” Each family receives a large, sturdy tote bag that is chock-full of gifts for the patient, such as a cozy fleece blanket, snuggly stuffed animal, and toys as well as useful supplies, like toiletries for an overnight stay, for parents and other caretakers. In the first few chaotic hours and days after diagnosis, details like remembering to pack a toothbrush often elude parents, making the comfort bags a truly helpful gesture.

Brody and his voyage beads.

Brody and his voyage beads.

Voyage Beads: Remember “Add-a-Bead” necklaces? Half the fun was collecting the beads. C.U.R.E. offers a similar experience for cancer patients with its Voyage Beads. 

Part jewelry, part documentation of each step along their journey, C.U.R.E.’s Voyage Beads are a way for patients to mark significant milestones and eventually to see how far they’ve come in their fight against cancer. When they first receive it, a child’s necklace has only beads that spell out their name. Each bead they receive represents a different treatment or procedure: white beads for chemotherapy, red ones for blood transfusions.

The Voyage Bead program proved so popular with patients that in 2018, personalized necklaces and beads were offered to siblings as well. Often, the brothers and sisters of children with cancer can feel left out or left behind, since so much attention is necessarily paid to the patient. Having their own Voyage Beads includes them in the experience and is an acknowledgement of how chronic illness affects all members of the family.


Emotional and Social Support for Family Members

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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.

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. 

C.U.R.E. Parents at The Great Escape Room.

C.U.R.E. Parents at The Great Escape Room.

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 a 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.


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.


Boost Tutoring Program

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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.


Resource Library furnished by the John F. Wegman Fund

C.U.R.E. 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.

The Harrison Family

The Harrison Family moved back home to Rochester from Germany when they found out one of their sons had a brain tumor. Read more about their story and how C.U.R.E left an imprint on their hearts.

It was like living in a vortex.
— Sarah Harrison

Resources

American Childhood Cancer Organization – Advocacy organization that provides free books and materials for parents, young patients, siblings, educators, and caregivers.

Children’s Oncology Group (COG) ­- National Cancer Institute supports clinical trials devoted exclusively to childhood and adolescent cancer research.

CureSearch – Funds and supports children’s cancer research and provides information and resources.

Leukemia and Lymphoma Society – Funds blood cancer research and provides information and support.

American Cancer Society – Information about diseases, treatment and support.

Livestrong (Lance Armstrong Foundation) – Information and resources for support.

National Cancer Institute -­ Federal Government’s principal agency for cancer research. Information about cancer diagnosis, treatment and continuing care.

Starlight Children’s Foundation – Educational online programming to help sick children understand common hospital procedures and manage illnesses such as cancer.

Gilda’s Club – Social and emotional support supplemental to medical care.

Bite Me Cancer – Funds thyroid cancer research and provides information and support. Resources for teens dealing with all cancers as well.

Make a Wish Western & Metro New York – Wish granting organization that services children with life-threatening medical conditions.

CaringBridge – Free personal web site used by many parents to chronicle and communicate their child’s journey.

National Cancer Institute – Comprehensive information on cancer, nation’s leader in cancer research.

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

Colburn – Keenan Foundation, Inc. – A charitable organization that supports students with blood disorders through a designated scholarship program for higher education.

Eating Well During and After Your Cancer Treatment – This information will help you maintain your nutrition during and after your cancer treatment.

Support for College Students with Cancer – The guide includes extensive information, online resources, support organizations, and an ‘insider perspective’ from a young student currently undergoing treatment for cancer.


Family Events