PLATINUM2023

Sebastianstrong Foundation

Discovering Hope for Kids with Cancer

aka SebastianStrong   |   Miami Springs, FL   |  www.sebastianstrong.org

Mission

SebastianStrong Foundation is a 501(c)3 nonprofit that is raising awareness of childhood cancers and funding research for less toxic, more targeted childhood cancer treatments and cures. SebastianStrong was founded in 2017 to honor the life of Sebastian Ortiz (2000-2016) and his courageous 14-month journey with rhabdomyosarcoma. Since then, the Foundation has committed to over $4 million in grants to fund new and cutting-edge medical research across the country in the hopes of one day eradicating childhood cancers. The Foundation also provides financial support to assist kids and their families with the hardships of battling cancer. To learn more, follow us @SebsStrong (Instagram and Twitter) and @SebastianStrong (Facebook), and visit us at www.SebastianStrong.org.

Ruling year info

2017

Executive Director

Oscar P. Ortiz

Main address

P.O. BOX 661156

Miami Springs, FL 33266 USA

Show more contact info

EIN

81-5044002

NTEE code info

Fund Raising and/or Fund Distribution (G12)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2022, 2022 and 2021.
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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Pediatric cancer research is drastically underfunded. Treatment protocols are outdated, extremely limited, toxic, and often ineffective. Additionally, there is an enormous need for an increased public awareness of the problem.

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?

Research Grants

SebastianStrong's focus is on funding cutting-edge pediatric cancer research. We aim to fund research that focuses on less toxic & more targeted treatments & cures - from finding ways to make chemotherapy treatment less toxic & more effective, to finding ways to teach the body to fight cancer. Projects are selected through a rigorous review process by our Medical Advisory Board.

Population(s) Served
Children and youth

SebastianStrong works to bring awareness & knowledge of childhood cancer to the general public as well as childhood cancer families through awareness, educational, & volunteer activities. We routinely educate the general public through guest lectures/presentations at schools & community events. We also participate in family/patient activities at local hospitals. We offer volunteer activities, which allow participants to get involved in increasing awareness & knowledge of the cause. We also provide scholarships to high school seniors pursuing STEM careers to encourage growth in the field and to feed the well of future researchers.

Population(s) Served
Children and youth

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.

Number of research studies funded

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

Children and youth

Related Program

Research Grants

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of organizations applying for grants

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

People with diseases and illnesses

Related Program

Research Grants

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Average grant amount

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

People with diseases and illnesses

Related Program

Research Grants

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The dollars reflected here are actual dollars paid out each calendar year. Total amounts granted are closer to $500K/year but paid over 2-3 year agreement based on progress of research.

Average number of dollars received per donor

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

People with diseases and illnesses

Related Program

Research Grants

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Total dollar amount of grants awarded

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

People with diseases and illnesses

Related Program

Research Grants

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of donors retained

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

People with diseases and illnesses

Related Program

Research Grants

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

These are rough estimates as we changed CRM systems in 2021 and lost some critical data in the integration.

Total number of grants awarded

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

People with diseases and illnesses

Related Program

Research Grants

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of new donors

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

People with diseases and illnesses

Related Program

Research Grants

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

These are rough estimates as we changed CRM systems in 2021 and lost some critical data in the integration.

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 Foundation aims to increase the public's awareness of the need for funding research in order to find less toxic and more targeted treatments and cures for pediatric cancers. Additionally we seek to raise money in order to fund cutting-edge research in this field.

Strategies involve participating in speaking engagements in the community in order to increase awareness, as well as hosting events ranging from dress down days to a 5K and Gala in order to raise necessary funds, as well as seeking out partnerships and sponsorships with local, state, and national organizations and corporations. One of our largest fundraisers is a kayaking event, Kayaking the Keys for a Cure, where a team of paddlers kayaks from Key Largo to Key West in order to raise awareness and funding for research.

We have a diverse Board of Directors composed of well respected, capable, and connected men and women who are dedicated to making a positive impact in the fight against pediatric cancers. The passion and dedication of our supporters and sponsors is our most valuable asset.

SebastianStrong Foundation is a 501(c)3 nonprofit that is raising awareness of childhood cancers and funding research for less toxic, more targeted childhood cancer treatments and cures. SebastianStrong was founded in 2017 to honor the life of Sebastian Ortiz (2000-2016) and his courageous 14-month battle with rhabdomyosarcoma. Since then, the Foundation has awarded nearly $3 million in grants to fund new and cutting-edge medical research across the country in the hopes of one day eradicating childhood cancers. The Foundation also provides financial support to assist kids and their families with the hardships of battling cancer.

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 shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve

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

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, 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 engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, 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?

    Staff find it hard to prioritize feedback collection and review due to lack of time

Financials

Sebastianstrong Foundation
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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.

Sebastianstrong Foundation

Board of directors
as of 09/06/2023
SOURCE: Self-reported by organization
Board chair

Taylor Binder

IntraFi

Term: 2021 - 2024

Alexander Sueiro

PAAST

Frank Gonzalez

BDO

Oscar Ortiz

SebastianStrong Foundation

James McAllister

Former Banking Industry Executive

Armando Lapido

iHeart Radio

Ramon Branger

Branger_Briz

Jose Cueto

International Finance Bank

Taylor Binder

IntraFi Network

Javier Vazquez

Berger Singerman LLP

Rebecca Mendez

Stearns Weaver

Kelsey Weaver

FinTech Entrepreneur

Michael Percy

Crowe LLP

Leo Gonzalez

Crowe LLP

Jasmine Ortiz

Sebastianstrong Foundation

Braulio Ortiz

BioTeknica

Yesenia Moreno

New Edge Associates

Martha Guerra

US Century Bank

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 ? Yes
  • 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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 4/4/2023

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
Hispanic/Latino/Latina/Latinx
Gender identity
Male, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 09/06/2023

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 have community representation at the board level, either on the board itself or through a community advisory board.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.