Kids Beating Cancer, Inc.

Science is the Cure

aka Kids Beating Cancer   |   Winter Park, FL   |  www.kidsbeatingcancer.org

Mission

Kids Beating Cancer provides access to life-saving treatments through the science of cellular therapy and advancing pediatric innovative, novel, research, moving new discoveries to patient care, while supporting the children and their families throughout the journey to a cure. Science is the cure to saving children’s lives.

Ruling year info

1992

CEO, President, Founder

Mrs. Margaret Voight Guedes

Main address

1720 Lee Road

Winter Park, FL 32789 USA

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Formerly known as

John Voight Memorial Foundation, Inc.

EIN

59-3136203

NTEE code info

Human Services - Multipurpose and Other N.E.C. (P99)

Health Support Services (E60)

Cancer (G30)

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

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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?

"Fund the Match" Kids Beating Cancer Transplant Center program

The testing to determine if children are transplant eligible and to identify their donor is just the beginning of the financial burdens that will devastate a family during the treatment process. Kids Beating Cancer reduces this burden by funding the pre-transplant testing cost. These costs are never funded by Medicaid and most insurances, and include the expensive donor matching tests and donor search expenses so every child can access their only hope for a cure. The average cost per for child is $10,000 even before the transplant is started. Kids Beating Cancer reduces that burden on the families so every child can have equal access to a cure through the “Fund the Match” program for children seen at the Kids Beating Cancer Pediatric Transplant Center, located at AdventHealth. Poised to be the busiest Pediatric Transplant Center in the State of Florida and it is the only pediatric center serving Orlando, Winter Park, all three Central Florida children’s hospitals and surrounding counties.“Fund the Match” program allows children access to the only treatment that gives them the chance to grow up, free of pain, and to live a normal life span. With Medicaid NEVER funding the pre-transplant testing from patient eligibility, to transplant readiness, and testing family members necessary to identify a potential donor, to funding a national and international donor search for a volunteer or cord blood donor, Kids Beating Cancer is the only funding source to give low-income children access to the only medical treatment for a chance at a cure. With the increased number of Central Florida children diagnosed with one of 80 different diseases only treated by a stem cell transplant, KBC’s "Fund the Match" program needs to increase funding to sustain the Center's ability to treat any child regardless of insurance coverage.

Population(s) Served
Children and youth

Sometimes the simplest of problems becomes overwhelming during hospitalization. Buying food and eating with your child, who may be too critical to leave alone, becomes one of these burdens. Kids Beating Cancer provides Food Vouchers for families so they can order food from their child’s hospital room and eat with their child during hospital stays.  In addition, Kids Beating Cancer keeps the Transplant Center Family Kitchen stocked with meals, snacks, and drinks. Kids Beating Cancer reduces this burden on the family by providing meals, in their child’s hospital room, so parents don’t have to worry if they have cash in order to eat. The “Food for Families” program is not simply providing meals as an end in itself. Hospital studies have shown that the entire family complex adds to survival and successful treatment when daily stresses are controlled. Removing the need to worry about where every meal is coming from provides stability and freedom from financial stress for these families going through this tremendously stressful treatment, and actually contributes to the successful outcome for the child. The transplant team has express ed this is vital to keeping the parents healthy and strong so they can have the endurance to be able to cope with the life of living in their child’s hospital room for many weeks, even months during the transplant process. The measurement of the need for this program, is reflected through in the number of Meal Vouchers distributed since the program began in 20015. Through July 2019 15,612  meals were provided totaling $156,120. In addition, we keep the Family Kitchen stocked weekly with groceries, inventorying items consumed, preferred and requested, adjusting purchasing to meet the needs of the families.

Population(s) Served
Families
Children and youth

At the Kids Beating Cancer Pediatric Transplant Center, we want children and families to feel at home. When a child needs a stem cell transplant the treatment will require them to be away from the familiarity and comforts of home for many weeks, even months. “My Room” program provides a ‘safe, fun, place’ during a child’s transplant. The transplant process is lengthy, coupled with an extended stay away from the child’s own space, causes children to become very homesick. We know that a hospital can be a scary place for a young child. A customized, themed hospital room is done according to each child’s preference. From sheets and bedding to toys and games, the hospital room will be filled with the bright colors of; Disney Princesses to Spiderman, Ninja Turtles to Star Wars or one of many other themes. The children can then focus on the fun of their theme, softening the look of a very high tech, state of the art Kids Beating Cancer Pediatric Transplant Center hospital room. Parents and the transplant team have expressed to KBC how important it is for the child’s well-being by making the hospital room personalized, fun, and less institutionalize. The parents and the transplant team shared it helped the children feel less scared, in better spirits, and less depressed during the most difficult of all hospital stays since diagnosis. We monitor success through the spirts lifted in the children expressed to KBC through the parents, Physicians, Nurses, and social workers. The more home-like we transform the hospital rooms over shadowing the "institutional scary hospital look" softens them to a magical, comforting security, the children themselves selected. The measurement in the need is reflect through the post discharge surveys of the child’s experience during their time in the KBC Transplant Center.

Population(s) Served
Children and youth
Economically disadvantaged people

Karing 4 Kids provides children once out of the hospital, and their families, with individualized support services to survive the day-to-day, critical, and complex needs that occur while their child is in treatment. KBC provides; family parties, tickets to events and attractions, and holiday celebrations for children and their families. Bringing families together during the treatment process is a positive experience. Parents express it helps them to better cope, and gives them a base of support. Families have shared with KBC their appreciation for this program, emphasizing the impact of bringing families together in a safe environment, the joy in seeing their children happy with friends that understand their situations, brings joy and comfort in between the many painful treatments and hospitalizations.

Population(s) Served
People with diseases and illnesses

Kids Beating Cancer is a trusted resource for the community and beyond on bone marrow transplantation and cellular therapy. Through outreach and education, Kids Beating Cancer is a leader in raising awareness of the need for pediatric transplantation via media exhibition, public events, and forums. The diseases that Kids Beating Cancer deals with are going to be cured over the coming decades not by present methods, but by new knowledge that is going to be acquired and is at the forefront of scientific inquiry today. Planned for February 23, 2020: “Science is the Cure Research Symposium,” a medical research conference in Orlando. This symposium will share the science behind bone marrow transplantation and cellular therapy. Research Scientist will submit research proposals for pediatric cancer research studies in advance, 20 recipients will be selected to present at the symposium, they will be judged by a scientific panel, and one scientist will receive a $100,000 at the conclusion of the symposium

Population(s) Served
People with diseases and illnesses

The Kids Beating Cancer Cellular Therapy Lab will break ground in 2020 at AdventHealth Orlando. This new Research Center will provide the only pediatric cancer research in Central Florida, housing the soon to be hired Kids Beating Cancer Endowed Pediatric Research Chair. This center will provide critical procedures necessary for pediatric bone-marrow and stem cell transplants, reducing the wait time for patients and reducing health care costs. The ability to have a state-of-the-art lab with the best medical equipment will also have a tremendous effect on the treatments that can be offered in house versus having to be sent out to a third-party laboratory. The hours gained can seem like a lifetime for a child and their family.

Population(s) Served
People with diseases and illnesses

Kids Beating Cancer Children’s Fund provides a series of unique and critically needed services directed at removing some of the overwhelming burdens placed on families going through the prolonged and difficult treatment process of a bone marrow or stem cell transplant.

Kids Beating Cancer Children’s Fund focus for these special children and their families, is what every parent wants: their child to be healthy, to beat cancer, and for the family to survive the long journey to a cure.

The Children’s Fund vision that inspired years of tenacious, unwavering effort was culminated in the opening of the KIDS BEATING CANCER PEDIATRIC TRANSPLANT CENTER, at AdventHealth for Children in Orlando in 2012, an 8-bed state-of-the-art facility.

Through Kids Beating Cancer Children’s Fund, children are able to access bone marrow and stem cell transplants by identifying a compatible donor, costs never covered by Medicaid and some insurances through the FUND THE MATCH program. Children arrive in the KIDS BEATING CANCER PEDIATRIC TRANSPLANT CENTER to a fully decorated, fun themed hospital room selected by the child, reducing fear and stress through the MY ROOM” program. The “FOOD FOR FAMILIES” programs keeps the Kids Beating Cancer Pediatric Transplant Center Kitchen stocked with meals, drinks, and snacks, as well as food vouchers are available for meals to be delivered to help the families remain strong and less overwhelmed with the fear of not being able to afford the most basic necessity during transplant, food.

The heart of the Kids Beating Cancer Children’s Fund is
SAVING CHILDREN’S LIVES.

Population(s) Served
Children and youth
Chronically ill people
Terminally ill people
Low-income people

Where we work

Awards

Affiliations & memberships

AFP (Association of Fundraising Professionals) 2019

Chamber of Commerce 2013

Rollins College Philanthropy and Nonprofit Leadership Center 2019

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 meal cards given to families while a child is staying in the hospital.

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

Children and youth, Families

Related Program

"Food for Families" Kids Beating Cancer Transplant Center program

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

We have provided over 15,000 meals to families since the start of the Kids Beating Cancer Food for Families Program at the Kids Beating Cancer Pediatric Transplant while children are in treatment.

Number of transplants funded

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

Children and youth

Related Program

"Fund the Match" Kids Beating Cancer Transplant Center program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The number of children receiving access to life-saving bone marrow transplants continues to increase. Kids Beating Cancer provides funding to give children diagnosed with cancer access to transplants

Total number of grants awarded

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

Children and youth, People with diseases and illnesses

Related Program

Fund the Cure Research & Education

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Annually, Kids Beating Cancer hosts the SCIENCE IS THE CURE RESEARCH SYMPOSIUM and awards $100,000 grants for pediatric cancer research projects around the country.

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.

Kids Beating Cancer has 3 major goals: saving children’s lives, reducing financial barriers to lifesaving healthcare, and expanding pediatric cancer research. FUND THE MATCH – removes the financial barriers to healthcare access by funding the pre-transplant testing and donor identification, cost per child of $10,000 that is never covered by Medicaid, allowing children to access a life-saving marrow or stem cell transplant at the Kids Beating Cancer Pediatric Transplant Center. FUND THE CURE – cover costs of infusion therapy treatments at the Kids Beating Cancer Infusion Center allowing children to receive needed infusion treatments before and after their transplant in an outpatient setting and funding the cost of medical technology and cellular therapy at the Kids Beating Cancer Cellular Therapy Lab providing these children access to state of the art treatments while reducing healthcare costs. FOOD FOR FAMILIES – provides Meal Vouchers and a stocked Family Kitchen for families while their child is receiving a transplant, so parents don’t have to worry if they have cash in order to eat, as sometimes the simplest of problems becomes overwhelming during hospitalization. FAMILY SUPPORT SERVICES MY ROOM – provides a themed room of their choice to each patient admitted to the Kids Beating Cancer Transplant Center, making the lengthy hospital stay more comfortable for the child and their family while uplifting their spirits and reducing the fear of scary medical procedures and equipment. KARING 4 KIDS – provides quarterly parties, special celebrations, and outings for children and their families on treatment. Parents express it helps them to better cope, gives them a base of support, and deep friendships. EXPANDING THE SCIENCE BEHIND THE CURE MEDICAL RESEARCH – launch a medical research symposium in 2020 to advance the science behind the cure by inviting scientist and researchers conducting research on bone marrow and stem cell treatments to submit research proposals to receive grants to move closer to a cure to pediatric cancers.

The financial requirements to Fund the Cure, and the programs such as Fund the Match and Science is the Cure are significant and ongoing. Our fundraising strategy encompasses a year-long engagement with our donors through a number of propsals, impact reporting, meetings, events and fundraising campaigns. Our major annual fundraising event, the Hats & Heroes Ball, raises critical funds for our Fund the Cure programs. Although events like these are not an enduring foundation for future growth and sustainability. such event's added value lies in presenting Kids Beating Cancer and its mission to encourage the interest and commitment of individual and corporate donors. Of the many good causes for children, particularly ill children, Kids Beating Cancer is the only non-profit of its kind, which serves to set it apart from others and to encourage long-term donor commitment in this very competitive marketplace.First of all, Kids Beating Cancer serves children with cancer, leukemia, and over 80 other related life-threatening diseases, which can only be cured with a bone marrow or stem cell transplant. Thus, from the very beginning, Kids Beating Cancer's mission is defined as life itself. Even though this treatment is life saving, children without resources cannot even begin the process of finding a donor, or begin treatment without extensive testing that is never covered by Medicaid and most insurers. This compelling argument raises donors to KBC to a very high level from the very beginning. KBC programs assist children without which curative treatment is delayed or not accessible at all. Secondly, KBC takes care of children right here in Central Florida. Funds pledged to KBC do not go to some distant program with unknown people and unknown priorities. These are children and families right here in Central Florida. You can see them at the annual events, they may even be your neighbor’s child. This is a powerful draw for local support. Finally, the credibility and strength of the organization is exemplified by number of children that accessed treatment at the Kids Beating Cancer Pediatric Transplant Center at AdventHealth for Children. This association gives legitimacy to KBC, which can be a powerful reassurance to any potential donor. Clearly, KBC is not some small, family organization that may not exist for the long hall. The association with the strongest hospital system in the state guarantees its credibility, quality, and safety for the organization or individual seeking to donate to a children’s cause.These arguments underline a continuing approach to the community for long-term foundational support to carry out KBC’s mission for the foreseeable future.

The concepts listed above are powerful arguments for the importance and credibility of Kids Beating Cancer's mission and should serve to both inspire and convince potential donors. In order to reach these donors however, one must build a consortium of individuals representing or having contacts with those who can support and understand the KBC vision and its significance. With this in mind, Kids Beating Cancer recruited 5 new board members in 2017 and 2018 with connections to the local community that have opened several new doors and access to a number of new partners and organizations. Additional, Kids Beating Cancer organized in 2017 and continues to recruit individuals of influence in the national corporate and local community to participate in the building and growth of KBC’s financial program through a Development Advisory Board. Obviously, the philanthropic world is very competitive and requires committed individuals who will not only contribute personally, but also serve as ambassadors to the community at large.personally, but also serve as ambassadors to the community at large.

In regard to the discussion of recent progress toward long-term goals, we go back to the one overwhelming achievement, the establishment of the Kids Beating Cancer Pediatric Transplant Center to our direction now to go beyond, and Fund the Cure through Research. This is an example of success on many levels. The raising of funds going directly to patient care, i.e.: pre-transplant testing and treatment and using the relationship exemplified by that commitment to obtain a joint commitment from a powerful community resource (another words AdventHealth for Children) to achieve a KBC goal is exemplified in the transplant center establishment. The recent establishment of the Fund the Cure commitment to establish the Kids Beating Cancer Cellular Therapy Lab at AdventHealth for Children (to break ground in 2020) and the Science is the Cure Research Symposium (February 2020), moves our long-term vision to advance the science behind the cure to the forefront.What this exemplifies going forward is that an organization such as KBC that started with limited resources, but great vision and commitment, can, through alliances with powerful resources, achieve objectives that would otherwise be impossible. Continuing to build these types of alliances with powerful local resources and organizations will be a cornerstone of KBC’s plan going forward. The continued support of programs such as the Karing 4 Kids, not only directly supports the population we serve, but underlines the human aspects of what we do and serve as a foundation enabling us to reach out to the community for support to achieve goals that we cannot accomplish alone.

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.
  • Who are the people you serve with your mission?

    Children diagnosed with cancer and other life-threatening diseases.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • 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 identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Adjusted offerings in some of our programs.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • 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 look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    We don’t have the right technology to collect and aggregate feedback efficiently, It is difficult to find the ongoing funding to support feedback collection,

Financials

Kids Beating Cancer, 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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Connect with nonprofit leaders

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  • Compare nonprofit financials to similar organizations

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Kids Beating Cancer, Inc.

Board of directors
as of 7/14/2021
SOURCE: Self-reported by organization
Board co-chair

Sam Azar

Kids Beating Cancer

Term: 2017 - 2021


Board co-chair

John Bocchino

Beytin, McLaughlin, McLaughlin, O'Hara, Bocchino & Bolin, P.A.

Term: 2015 - 2017

Margaret Guedes

Kids Beating Cancer, Inc.

Marilyn Stout

Wall St. Investment Managers P.A.

Ben Guedes

Florida Pediatric Associates

Kayleen Woo

1995 LLC

Sam Azar

Kids Beating Cancer

Seth Miller

Talk of the Town Restaurant Group

Kelly Allred

University of Central Florida

Donnie Saxon

Saxon-Clark

Tom Lupo

Space Coast Pictures

David Shook

AdventHealth for Children

John Bocchino

Donald Saxon

Saxon-Clark

Kim McFadden

ShalkChop Events

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 07/14/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 07/14/2021

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 review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • 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 use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • 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.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • 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.