At C.U.R.E. we aim to create an atmosphere of comfort, support, and care. From providing free parking passes to visiting with patients and families who are hospitalized or at the Outpatient Clinic/Treatment Center, C.U.R.E. makes your family our focus.
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 firstname.lastname@example.org or speak to any Parent Advocate or other volunteer.
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.
Voyage Beads: Remember “Add-a-Bead” necklaces? Half the fun was collecting the beads. CURE 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.
Parking Passes: C.U.R.E. provides parking passes to help each and every family who is fighting childhood cancer or chronic blood disorder so they never have to worry about parking when visiting their child in the hospital or attending essential appointments. When a child is hospitalized, parents are provided with parking vouchers for as long and as often as their child is an inpatient.
In addition, a parking voucher is provided to parents during each outpatient/clinic visit.
The parking voucher program has been an enormous source of financial relief as hospitalizations can often last a month or longer, creating a huge financial burden for many families. C.U.R.E.’s parking program saves families up to $60,000 annually.
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.
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.
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.
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 Misere Family
The Misere Family lost count of the number of times they were in the hospital the first year of Laila’s life. They’ve turned to C.U.R.E. for support and solace.
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.
Children with Hair Loss - Provides wigs and hats to children who have experienced medical hair loss.