HomeHow We Help
Initiatives We Invest In
Thanks to the generous support of companies, teams and individuals each year, Paige’s Butterfly Run, Inc. is able to raise critical funds to benefit the children of Central New York. After event expenses our organization invests in the following initiatives that support the Central New York community.
Our Comfort Kit program provides each newly diagnosed family with a backpack that is stocked with
items to help them through their unbidden journey with pediatric cancer. This kit is targeted for use by
the caregiving parents, providing them with tools to immediately start navigating their frequent trips
(some expected, some not) to Upstate Golisano Children’s Hospital for their child’s care. The backpack
typically become the parent’s “go bag” for hospital trips and contain the following:
• Warm fleece blanket – each inpatient room at Golisano has sleep accommodations for a
parent
• Reusable water (or coffee) bottle – a caregiver needs to care for themselves, as they care for
others
• Toiletry kit – unexpected overnights happen
• PBR Tees – two t-shirts are included for a change of clothes for an unexpected overnight stay
• $200 Visa Gift Card – for any purchases deemed an immediate need by the family
Assisting families at the Dr. William J. Waters Center for Children’s Cancer and Blood Disorders at Upstate Golisano Children’s Hospital impacted by financial costs for travel, accommodations, out-of-pocket expenses for food, phone bills, household bills and loss of income as well as unpaid medical bills.
Providing the Child Life Specialists on the inpatient and outpatient floors of the Dr. William J. Waters Center for Children’s Cancer and Blood Disorders at Upstate Golisano Children’s Hospital with the resources for educational and teaching materials about new diagnosis, family meals, celebrations for birthdays and holidays, and to generally lighten their lives when they are in the hospital for treatment.
Providing the Child Life Specialists on the outpatient clinic of the Dr. William J. Waters Center for Children’s Cancer and Blood Disorders at Upstate Golisano Children’s Hospital with the resources for educational and teaching materials, celebrations for birthdays and holidays, and art and craft supplies. These items help patients and families help to provide a safe and fun space, despite all of the chances in their lives.
Sponsors ongoing events throughout the year providing patients and families the opportunity to attend special events outside a medical setting. This allows families a chance to enjoy their time together without added medical concerns. Families are also able to connect with their peers and find support amongst each other.
Some of the events offered to patients and families include:
- Syracuse Crunch Hockey Game
- Syracuse Mets Baseball Game
- Sibling Event
- Holiday Party
*Events have are expected to resume in 2023.
The sponsorship of H.O.P.E. (Helping Oncology Patients and Parents Engage) events provides several opportunities for pediatric cancer patients, caregivers, and siblings to connect with other families battling a pediatric cancer diagnosis during inspirational and fun activities outside of the hospital in a non-medical environment.
Upstate Golisano Children’s Hospital treats children with cancer from a 22-county catchment area. About 50% of patients are outside Onondaga County, with some traveling nearly 100 miles each way for treatment. Those families living furthest from the medical center, those whose child has spent relatively longer on treatment, and those requiring frequent outpatient visits are most impacted by the hidden out-of-pocket costs such as travel.
To decrease this burden, Paige’s Fund for Transportation provides families whose child is receiving active therapy and using a private vehicle for transportation gas cards to offset this expense.
The Survivor Wellness Program provides long-term follow-up care for individuals after they have received treatment for childhood cancer at the Dr. William J. Waters Center for Children’s Cancer and Blood Disorders at Upstate Golisano Children’s Hospital. It helps cover unmet medical needs related to the effects of childhood cancer treatment including dental, fertility preservation and infertility assessments, medical, and audiology.
Having a cancer diagnosis at any age is stressful, but being diagnosed and going through treatment as an adolescent or young adult creates additional and unique psychosocial stressors. Many adolescents and young adult (AYA) survivors describe feeling different than their peers and struggling to identify who they are and where they are going post-treatment. Paige’s Survivor Wellness Fund provides support for patients in this age group to participate in a national program such as Camp Mak-A-Dream and Cancer Connections AYA conference.
Paige’s Bereavement Fund provides financial assistance to families towards funeral costs and grief counseling after their child has passed. Paige’s Bereavement Fund also supports the annual remembrance service which honors all the children who lost their battle to childhood cancer at the Dr. William J. Waters Center for Children’s Cancer and Blood Disorders.
Paige’s Butterfly Run supports pediatric cancer research being done at SUNY Upstate and Golisano Children’s Hospital, both in the laboratory and through clinical research studies. The pediatric oncology program at Golisano Children’s Hospital is an active participant in national consortiums such as the Children’s Oncology Group, Head Start studies for infants with brain tumors, and NACHO. This allows patients treated at our center to access to state-of-the-art care through clinical research trials.
A permanent endowment established with the Upstate Foundation used to support the Department Chair of Pediatric Oncology at Upstate Golisano Children’s Hospital. This endowment serves to attract and retain top talent in the field of pediatric oncology for Upstate Golisano Children’s Hospital.
A permanent endowment established with the Upstate Foundation used to provide financial assistance for the patients and their families at Upstate Golisano Children’s Hospital.
Guidestar Information
