PLATINUM2023

PAIGES BUTTERFLY RUN INC

Fighting Pediatric Cancer. Funding Hope.

Syracuse, NY   |  www.pbrun.org

Mission

The mission of Paige's Butterfly Run, Inc. is to raise and distribute funds with integrity for the benefit of current and future pediatric cancer patients and their families in Central New York through the sponsorship of pediatric cancer research and patient programs at Upstate Golisano Children's Hospital in Syracuse New York.

Ruling year info

1999

President, Board President

Mr. Chris Arnold

Main address

50 Presidential Plaza; Suite LL-3

Syracuse, NY 13202 USA

Show more contact info

EIN

52-2154937

NTEE code info

Fund Raising and/or Fund Distribution (T12)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Each year over 60 children will be newly diagnosed with cancer and other blood disorders at Upstate Golisano Children’s Hospital. The impact of such a diagnosis is far reaching, affecting not only that child but also his or her family and their community. The only one of its kind in a 22-county region, the Dr. William J. Waters Center for Children’s Cancer and Blood Disorders at Upstate Golisano Children’s Hospital will serve upwards of 700 children with various malignancies and blood disorders this year, as well as conduct research for tomorrow’s cures.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Paige’s Cancer Research Fund

Funding research at Upstate Golisano Children’s Hospital in applications for pediatric oncology

Population(s) Served
People with diseases and illnesses
Academics

Assisting families at the Dr. William J. Waters Center for Children’s Cancer and Blood Disorders at Upstate Golisano Children’s Hospital having financial difficulties due to their child’s illness, with help for treatment, wellness and survivorship.

Programs funded through Paige’s Family & Survivor Assistance Fund
Paige’s Burial Assistance Fund
Paige’s Comfort Kit Fund
Paige’s Support of Family Therapy Fund
Paige’s Supports ‘Champions Again’ Fund
* Cancer in the Classroom
Paige’s Survivor Wellness Fund

Population(s) Served
Families
People with diseases and illnesses

A permanent endowment established at the Upstate Foundation used to support the Department Chair of Pediatric Oncology at Upstate Golisano Children’s Hospital.

Population(s) Served
Adults

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 with the resources for family meals, celebrations for birthdays and holidays, and to generally lighten their lives when they are in the hospital for treatment.

Programs funded through Paige’s Comfort & Family Fun Fund
Paige’s Fun Fund for Families
Paige’s Outpatient Clinic Fund
Paige’s Sibling Event Fund

Population(s) Served
Families
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Total dollars received in contributions

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Dollars raised for Paige’s Butterfly Run, Inc. Information comes directly from our annual Record of Giving reports at http://pbrun.org/wp-content/uploads/2019/01/Paiges-Butterfly-Run-Inc.-2018-History

Number of volunteer committee members recruited, trained and retained

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults, Children and youth

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Increase in sponsorship dollars

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our mission is to help these local families who have already heard the words “your child has cancer”, as well as those who will soon hear those dreaded words.

The only one of its kind in a 22-county region, the Dr. William J. Waters Center for Children’s Cancer and Blood Disorders at Upstate Golisano Children’s Hospital will serve upwards of 700 children with various malignancies and blood disorders this year, as well as conduct research for tomorrow’s cures. Paige’s Butterfly Run, Inc. is an integral part of this service and research as the funds our organization raises through events each year support these initiatives.

Our organization holds several year round community fundraisers in Central New York to raise the maximum amount of funds possible to support children and families fighting pediatric cancer in our community.

These events include, but are not limited to:

Pedaling 4 Paige: An annual indoor spinning event held in March.

Paige's Butterfly Run: An annual 5K run and 3K walk held each June in downtown Syracuse.

Clams 4 Cures: Annual clambake with raffles, music, food and more!

Paige's Pajamarama: Held throughout the year in schools and offices, this event is a fun alternative to a 'jeans day.' On your chosen Pajamarama Day, students, teachers, etc. make a donation in order to wear pajamas in honor of children who have to while going through cancer treatment.

Childhood Cancer Awareness Month Campaign: Held annually in September, local buildings go 'Gold', Pajamarama events and butterfly sales are held. These events not only raise funds to support our work, but raise awareness.

Annual Appeal

For over 20 years, Paige's Butterfly Run, Inc. was completely volunteer run. The organization did not have a part-time or full-time paid staff person to run the day to day operations and focus solely on expanding fundraising efforts.

After developing a strategic plan in 2016, the organization made an investment in bringing on a full-time employee to manage event planning and fundraising goals. This person has been charged with managing day to day operations increasing fundraising revenue as well as raising the organization's profile across the Central New York community.

In 2022, Paige's Butterfly Run, Inc. brought on a new employee, who was given the title of Director of Development instead of Executive Director. The Board took over management of the committee, in order for the Director of Development to take more time to develop relationships with funders in the community. The organization's board of directors are comprised of community leaders who are in the fields of medicine, fundraising, strategic planning/leadership development, risk management and the legal field.

In 2023 the board has voted to undergo another strategic planning process. Our goal is to review where we have been, determine what we wish to do in the future, and to set a course for fulfilling our goals going forward. We do know that fighting pediatric cancer within our community will continue to be a core value in this process.

Since the fall of 2016 when Paige's Butterfly Run, Inc. hired a full-time Executive Director the following has been accomplished:

1. Increase in participants for fundraising events
2. Year round, mission related messaging on all social media platforms, online and in e-newsletters
3. Childhood Cancer Awareness Month campaign created and executed during the month of September
4. Local landmarks going Gold in Syracuse during Childhood Cancer Awareness Month
5. Board of directors expanded from 3 - 7 community members
6. Increase in schools that participate annually in Pajamarama Day
7. Increase in donor communications (fundraising participants, sponsorship recap packages, etc.)
8. Increase in annual appeal donations

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To inform the development of new programs/projects, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    The people we serve tell us they find data collection burdensome, HIPAA limitations

Financials

PAIGES BUTTERFLY RUN INC
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

PAIGES BUTTERFLY RUN INC

Board of directors
as of 02/07/2023
SOURCE: Self-reported by organization
Board chair

Chris Arnold

Reagan Companies

Term: 1999 -

Chris Arnold

No affiliation

Ralph Simone

Emergent

Kevin Bernstein

Bond, Schoeneck & King, PLLC

Dr. Melanie Comito

Upstate Medical University

Kristen Tallarico

Upstate Medical University

Nichole Moles

Morgan Stanley

Rachel Gilbert

Mower

Erica Muscatello

Dermody, Burke & Brown, CPAs LLC

Ellen Yeomans

Author

Winnie Nguyen

Dermody, Burke & Brown, CPAs LLC

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 2/7/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 02/07/2023

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.