16th Annual C.U.R.E 5K Run & Fun Walk

Who we are:

C.U.R.E. Childhood Cancer Association was founded nearly 50 years ago by a group of parents who lost their children to cancer. They discovered they had needs that were not met during their respective childhood cancer journeys and wanted to be sure no other parents ever felt as lost as they did. Founded under the principle of Parent Advocacy, C.U.R.E.'s mission is to provide practical, meaningful support to our families with an emphasis on supporting the parents of the sick child. At C.U.R.E., we Embrace Families at Every Turn and do what we can from the day of diagnosis throughout treatment and beyond to support pediatric hematology and oncology families. Our support comes in four forms: emotional, educational, financial and social. 

Parent Advocate Support Program:
 
The heart of C.U.R.E. Childhood Cancer Association is our Parent Advocate Support Program. Our Parent Advocate is in the trenches with families, providing support to family members as they navigate through treatment and beyond. 

First established in the mid-1980s, the Parent Advocate Support Program is ever-evolving to address the needs of patients and parents. 

 
Practical and Financial Help for Newly Diagnosed Families:
 
Our goal is to provide as much support to all of our families as possible. When a child is diagnosed, the family is typically inundated with appointments. C.U.R.E. provides each newly diagnosed family with a $100 gas gift card to help with traveling to and from these appointments, as well as parking passes for both hospital stays and visits to the Pediatric Hematology/Oncology Outpatient Clinic and Treatment Center.  

The parking program can save families up to $60,000 annually. 
 
Other Ways We Help:

Comfort Bags: C.U.R.E.’s Comfort Bags are distributed to newly diagnosed families. Unfortunately, sometimes families are admitted unexpectedly and do not have the supplies and things they would need for what could be an extended hospital stay. Every family receives a C.U.R.E. tote bag complete with toiletries, activities to do in the hospital room, a blanket and pillow case to bring comfort (and color!) to the room, a small pillow to help with receiving chemotherapy treatments and most importantly, our Parent/Patient Organizer. This Organizer was developed in partnership with Hospital Personnel to help families track and maintain the multitude of paperwork that follows a diagnosis and treatment. 

Voyage Beads: For many of our Kiddos, it is difficult to understand what is happening. Many are also young and (luckily) won't remember the journey they've been on. Our Voyage Bead Program is a visual representation of each child's unique cancer journey. With colorful beads representing various experiences (such as blood transfusions, chemotherapy, Emergency Room visits, and more), children can track what they've experienced.

C.U.R.E. also understands that cancer affects the whole family. As such, we expanded upon the Voyage Bead Program and started offering it to Siblings in 2018, so they could track their experiences alongside their sibling who is undergoing treatment.

 

Emotional and Social Support for Family Members

Parents’ Night Out: We established our Parents' Night Out events in August 2016, recognizing parents' desires to connect with other parents in addition to having time away to regroup and recharge. Participating in social activities is a fun, non-threatening way to meet other parents who have a child with cancer or chronic blood disorder. We have offered everything from corn mazes to paint nights to theater and more! Our parents look forward to these outings.

 
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 treatment, the Agnes K Mackey Fund provides financial support to families for everything from rent assistance to restaurant gift cards near the hospital and much more.

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 Pediatric Oncology/Hematology or Bone Marrow Transplant Social Worker at Golisano Children’s Hospital can also receive a grant of at least $500 (up to $2,500) toward funeral expenses for a pediatric cancer patient who has gained their wings.
 
Educational Liaison:
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.