Human Services

Kids Beating Cancer, Inc.

  • Orlando, FL
  • www.kidsbeatingcancer.com

Mission Statement

Kids Beating Cancer is advancing cures through the science of cutting edge treatment at the Kids Beating Cancer Pediatric Transplant Center 
while providing resources and support for Central Florida children with cancer, leukemia,
and related life-threatening diseases throughout the treatment process. The Only Non-Profit Foundation of its Kind in America, Kids Beating Cancer pays for the transplant testing and donor identification,
 costs never covered by Medicaid and only partially covered by insurance for children. By removing these financial barriers any child can have access
 to bone marrow and stem cell transplantation, at the
 Kids Beating Cancer Pediatric Transplant Center, the best-and only hope for a cure.

Main Programs

  1. "Fund the Match" Pediatric Marrow Transplant Program
  2. "Karing 4 Kids"
  3. "My Room"
  4. "Food for Families"
Service Areas

Self-reported

Florida

Kids Beating Cancer provides its greatest support to Central Florida and the surrounding counties. Although children travel to access our programs and services from many Florida counties. Brevard county for example, does not have any pediatric hematology-oncology physicians so all patients from Brevard travel to Central Florida. Kids Beating Cancer provides services for any child admitted to the Kids Beating Cancer Pediatric Transplant Center.

ruling year

1992

Principal Officer since 1992

Self-reported

Mrs. Margaret Voight Guedes

Keywords

Self-reported

Children, Cancer. Leukemia, Bone Marrow Transplantation, Pediatric Cellular Therapy, KBC

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Also Known As

N/A

EIN

59-3136203

 Number

6855704112

Contact

Cause Area (NTEE Code)

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.

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

TOP ACHIEVEMENTS 2015 1) KBC's Development Chairman, Tom Lupo, with Space Coast Pictures, recruited new members for the Development Advisory Board. The focus will be a new concept in fundraising coordinating events from the entertainment and music industry. 2) David Shook, MD, the new Medical Director of the KBC Pediatric Transplant Center at Florida Hospital for Children arrived from St Jude Children's Hospital. He brings award-winning skills and extensive research to young patients that need a stem cell transplant for 80 malignant and non-malignant diseases. 3) Massey Cadillac, new annual partnership, donated $31,750 to support local children in need of stem cell transplants at the Kids Beating Cancer Pediatric Transplant Center donating $250 for every new Cadillac sold in Dec. and will repeat the campaign annually.Goals 2016-2017 Fund increasing number of children in need of a stem cell transplant at the KBC Pediatric Transplant Center. Committed to removing the financial barriers to accessing transplants by funding the expensive pre-transplant testing and donor identification, $10,000 or more, costs NEVER covered by Medicaid and only partially covered by insurance, KBC's ""Fund the Match"" program is saving lives. Expand and diversify Board of Directors. With rapid growth in the number of children the KBC Pediatric Transplant Center serves, our mission unique to any other organization in the US, we are at a turning point. Goal to identify individuals committed to developing new strategies for accomplishing the short and long-term goals necessary with the growth of children in need of KBC programs, and develop new methods strengthening our strategic approach to fund development. Expand infrastructure. Clarify messaging: revise strategic plan, materials, and website to show impact and growth of KBC's programs, clarify what KBC does that no other children's cancer organization is doing, share accomplishments, and measurement of success.

Programs

Self-reported by organization

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

Program 1

"Fund the Match" Pediatric Marrow Transplant Program

Kids Beating Cancer's ""Fund the Match"" program objective is to be the resource so that no child diagnosed with cancer, leukemia or related life-threatening diseases will ever be denied treatment regardless of ability to pay. Kids Beating Cancer's ""Fund the Match"" goal is to guarantee access to transplantation by eliminating the financial barriers so that every child can receive this life-saving treatment when they need it at the Kids Beating Cancer Pediatric Marrow Transplant Center at Florida Hospital for Children. For many children, a transplant may be the best — and only — hope for a cure. Not all children, who could benefit from this life saving treatment, can access their only hope for a cure, due to the high cost of evaluating potential donors as well as the pretreatment testing the child themselves must have prior to treatment. Few families have the resources to personally sponsor this testing which is required prior to even beginning the transplant process. ""Fund the Match"" is Kids Beating Cancer's program to remove the financial barriers of $10,000 -$45,000 per child, often higher, allowing access to a life saving transplant, without delays. ""Fund the Match"" program allows children to access their best and only hope to grow up, free of pain, and to live a normal life span at the new Kids Beating Cancer Pediatric Marrow Transplant Center, is the first and facility of its kind in Central Florida. Already the 2nd largest, we are quickly becoming the Top Pediatric Transplant Center in the State of Florida. With this rapid growth and going forward, and with decreased healthcare funding for the pre-transplant testing and donor identification, increases the need for the "Fund the Match" program to sustain the Center's ability to treat any child regardless of insurance coverage.

Category

Health Care, General/Other

Population(s) Served

Children and Youth (0 - 19 years)

Blacks

Poor/Economically Disadvantaged, Indigent, General

Budget

$300,000.00

Program 2

"Karing 4 Kids"

Karing 4 Kids provides children battling cancer, leukemia, sickle cell, and related life-threatening blood diseases, and those in need of a bone marrow or stem cell transplant, 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; teddy bears to children, blankets and toys to children during treatment and provides quarterly parties, special celebrations, and outings for children and their families. Bringing families together during the treatment process is a positive experience. Parents express it helps them to better cope, gives them a base of support, and deep friendships. 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, in between so much painful treatments and hospitalizations.

Category

Health Care, General/Other

Population(s) Served

Children and Youth (0 - 19 years)

Other Named Groups

Poor/Economically Disadvantaged, Indigent, General

Budget

$200,000.00

Program 3

"My Room"

""My Room"" program provides a 'safe, fun, place' during a child's transplant. A customized, themed hospital room is done according to each child's preference, such as Disney Princess, Star Wars, nature, space, and even ""Paris"" themed bedding, with wall decorations, even decorating the IV pole, along with games, and toys corresponding with the theme and other age appropriate items. The transplant process is lengthy, coupled with an extended stay away from the familiarity and comfort of the child's own space, causing children to become very homesick. ""My Room"" puts the child's distinct fingerprint on the room they will be calling home for many months. 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 sports lifted in the children expressed to KBC through the parents, Physicians, Nurses, and social workers. The more personal we transforms the hospital rooms over shadowing the "institutional scary hospital look" is soften to a magical, comforting look, the children themselves selected. The measurement in the need for "My Rooms" is reflected in the rapidly growing number of children transplanted in 2016 verses 2015. In 2015 KBC averaged 1 "My Room" every other month. In 2016 we have had months as high a 5. The total projected during 2016 will be 30.

Category

Human Services, General/Other

Population(s) Served

Children and Youth (0 - 19 years)

Poor/Economically Disadvantaged, Indigent, General

Other Named Groups

Budget

$20,000.00

Program 4

"Food for Families"

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. Kids Beating Cancer reduces this burden on the family by funding meals, in their child's hospital room, so parents don't have to worry if they have cash in order to eat. The transplant team has express 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 the increase in the number of Meal Vouchers distributed from Jan - Aug 2016. KBC gave out 3,339 meal vouchers totaling $32,761. For the total year 2015, KBC gave out 2,123 totaling $20,488. With the rapidly growing increase in children in need of the services provided in the Kids Beating Cancer Pediatric Transplant Center, it correlates with the increased need to feed the families of the patients transplanted in the KBC PTC. The largest month of meal vouchers distributed in 2016 to date is $5,389 during the month of May. In 2015 our largest distribution month was $2,748 during the month of November 2015.

Category

Population(s) Served

Budget

$70,000.00

Charting Impact

Self-reported by organization

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

  1. What is the organization aiming to accomplish?
    Kids Beating Cancer (KBC) the only non-profit of its kind in the US, provides resources for children with cancer, leukemia and 80 related life-threatening diseases throughout the treatment process. By providing the pre-transplant testing and donor identification, costs never covered by Medicaid and only partially covered by insurance, any child can have access to stem cell transplantation, the best - and only hope for a cure. This testing is provided at no cost at the Kids Beating Cancer Pediatric Transplant Center. 1. REDUCING FINANCIAL BARRIERS FUND THE MATCH - removes the financial barriers to care by funding the pre-transplant workup, cost per child of $10,000 plus, that is never covered by Medicaid, allowing children access to a life saving transplant. FOOD FOR FAMILIES - provides Food Vouchers for families so they can order food from their child's hospital room and eat with their child during hospital stays. KBC reduces the burden on the family by funding meals, 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. 2. FAMILY SUPPORT SERVICES MY ROOM - the transplant process is lengthy, with an extended stay away from the familiarity and comfort of home, and children become homesick. Themed hospital rooms put a child's distinct fingerprint on the place they will be calling home for months. KARING 4 KIDS - KBC provides; quarterly parties, special celebrations, and outings for children and their families. Bringing families together during the treatment process is a positive experience. Parents express it helps them to better cope, gives them a base of support, and deep friendships. 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, in between so many painful treatments and hospitalizations. OUTREACH AND EDUCATION - a trusted resource for the community and the children and families during treatment and beyond. KBC does awareness events, educating the community and families about stem cell transplantation, the need for donors, and how to donate. 3. KIDS BEATING CANCER PEDIATRIC TRANSPLANT CENTER KBC has entered the treatment arena with this named, unique only facility in Central Florida, offering cutting edge treatment exclusively available at a handful of centers nationwide.
  2. What are the organization's key strategies for making this happen?
    The financial requirements for programs such as Fund the Match and the KBC PTC are significant and ongoing. On the one hand, KBC has had moderately successful fundraising events, such as our annual Hats & Heroes Ball. Although events like this raise some funds, they are not an enduring foundation for future growth and sustainability. Such events major value lies in presenting KBC and its mission to encourage the interest and commitment of individual and corporate donors. Of the many good causes for children, particularly ill children, KBC is the only non-profit of its kind, which serve to set it apart from others and to encourage long-term donor commitment in this very competitive marketplace. First of all, KBC serves children with cancer, leukemia, and over 80 other life-threatening diseases, which can only be cured with a bone marrow or stem cell transplant. Thus, from the very beginning, KBC'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 the Kids Beating Cancer Pediatric Transplant Center at Florida Hospital 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.
  3. What are the organization's capabilities for doing this?
    The concepts listed above are powerful arguments for the importance and credibility of KBC'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, KBC organized in 2015 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 (DAB). 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.
  4. How will they know if they are making progress?
    Key indicators as to progress being made with programs, fundraising, and mission development, are as follows. 1) The absolute number of participants is a direct measure of interest and impact, particularly in the Karing 4 Kids programs. These qualitatively serve the community KBC is trying to reach, and success is measured indirectly by demonstrating a growing number of participants. For example, the Holiday Party, an annual event, has grown to nearly 400 in 2015, from 200 in 2008. 2) The level of networking or community assistance with the Karing 4 Kids programs is a measure of KBC's growing partnership with community organizations and providers. The Orlando Ballet - Kids Beating Cancer Dance Program is an example of this type of success. 3) Positive response to programs is a strong indicator of success. The Food for Families Program has been overwhelmingly positively accepted. Numerous families have expressed their gratefulness for this reduction of the financial burden of having a child hospitalized for prolonged cancer treatment. 4) The sheer success of accomplishing the establishment of the Kids Beating Cancer Pediatric Transplant Center has been a measure of the long-term goal achievement of KBC that stands alone. Continued measure of that parameter is ongoing by the number of patients transplanted and treated in the Center, and the referring physicians and hospitals. Continuing to measure the number of children that are enabled to enter the transplant treatment process because of KBC's Fund the Match Program is a concrete measure of success in the achievement of long-term basic goals of the organization. Measurement of success in the field of philanthropy will rest with the success of the newly formed Development Advisory Board (DAB). Success will be measured by increase in the level of supporting funds raised by efforts and their circle of influence.
  5. What have and haven't they accomplished so far?
    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. 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 Florida Hospital for Children) to achieve a KBC goal is exemplified in the transplant center establishment. What this exemplifies going forward is that an organization such as KBC 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 through the DAB 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 underline 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 can not accomplish alone.
Service Areas

Self-reported

Florida

Kids Beating Cancer provides its greatest support to Central Florida and the surrounding counties. Although children travel to access our programs and services from many Florida counties. Brevard county for example, does not have any pediatric hematology-oncology physicians so all patients from Brevard travel to Central Florida. Kids Beating Cancer provides services for any child admitted to the Kids Beating Cancer Pediatric Transplant Center.

Social Media

Funding Needs

Needs 2016-2017 1. The most pressing need is to fund the increasing number of children in need of a stem cell transplant at the KBC Pediatric Transplant Center, the 2nd busiest center in Florida, by year end expected to be the BUSIEST pediatric transplant center in Florida! KBC is committed to removing the financial barriers to accessing transplantation. By funding the critically necessary and very expensive pre-transplant testing and donor identification, $10,000 or more, costs NEVER covered by Medicaid and only partially covered by insurance, KBC's ""Fund the Match"" program is saving children's lives. 2. The 2nd need is to expand and diversify our Board of Directors. With the rapid growth in the KBC Pediatric Transplant Center, and our mission, unique to any other organization in the US, we are at a turning point. The goal to identify individuals committed to developing new strategies for accomplishing the short and long-term goals necessary with the growth of children in need of KBC programs. 3. The 3rd need to expand infrastructure. 4. The 4th need to clarify our messaging to reflect the impact and growth of KBC's program, explain what is unique about KBC that no other children's cancer organization is doing, share our accomplishments, and measurement of success.

Accreditations

Affiliations + Memberships

AFP (Association of Fundraising Professionals)

Chamber of Commerce

photos


External Reviews

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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

KIDS BEATING CANCER INC
Fiscal year: Aug 01-Jul 31

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Operations

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

Kids Beating Cancer, Inc.

Leadership

NEED MORE INFO ON THIS NONPROFIT?

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Principal Officer

Mrs. Margaret Voight Guedes

BIO

Before founding Kids Beating Cancer, originally named John Voight Memorial Foundation, after Mrs. Guedes' nine year old son, John, had died from leukemia after two marrow transplants, she was the Center Director for Cigna Healthplan HMO Center in Altamonte Springs. The Center housed 8 Physicians, Pharmacy, Optical and Vision, Medical Records, Laboratory, Nursing and administrative support staff. Mrs. Guedes unique personal experience as a mother and care-giver of a child who fought an arduous battle to beat a rare form of leukemia and the four years struggling to keep her family in tack while torn apart by distance. Mrs. Guedes and her son had to travel to Seattle for both marrow transplants, with a newborn baby and her four-year old son, who was the donor. Over the course of months in Seattle for each transplant siblings were sent to distant relatives, leaving Mrs. Guedes alone with her son to face the day-to-day, sometimes hour-to-hour struggles to overcome many obstacles. The culminated past administrative and personal experience, gave Mrs. Guedes the passion and knowledge unique to nonprofit leaders. The grassroots organization, started in her home, has grown over the last twenty years to a sound and significant charity impacting the Central Florida community. Receiving many prestigious awards In 2012, Margaret Guedes received the prestigious H. Clifford Lee Lifetime Achievement Award at the Association of Fundraising Professionals' (AFP) 27thannual National Philanthropy Day Awards event. In 2011, KBC celebrated adding 37,000 new marrow donors to the Be The Match national marrow registry, 

 In August 2007 issue of Orlando Magazine, named Best of Orlando article Home Grown Charities, In July 2007 issue of Central Florida Doctor Magazine, 
article Always Giving… Never Giving Up article, In 2007 received America's Charity Top Flight Award and Top Agency Superstar 2007

 In May 2007 issue of Lifestyles Magazine, article on Mrs. Guedes, Amazing Mother, In 2006 received America's Charity Community Award 

 In September 2006
 issue Lifestyles Magazine article, Making Miracles One Donor At A Time, In 2004 Mrs. Guedes received the impressive Community Honoree Award from the National Speaking of Women's Health Foundation. From 1997-2004 received Community Service Awards and grants from Walt Disney World Corporation, including the "Judges Choice Award" twice, the ""Special Judges Award"" once, and the "Special Health Services " Award twice, and ""Helping Kids Shine"" grant. These awards are given to organizations they feel had made significant contributions to the community, surpassing their goals and expectations.



STATEMENT FROM THE Principal Officer

"I have often been asked why am I such an advocate for marrow and blood stem cell transplantation when my son did not survive. It is very simple, we were give 4 ½ years together to laugh, love and make memories, but most important we were given time. I know that marrow transplantation and stem cell therapy was, and still is, the only potential cure for children like my son, and it will continue to be the treatment that will evolve with future medical advances. If you ask any parent what is the one most important gift or service we could provide for them during their child's treatment, the answer is always the same. Not shopping sprees, or trips, or big screen televisions… they want the access to the treatment that can cure their child's disease - they want time. The children with cancer in our community need our unique services to receive a life-saving marrow and stem cell transplants. KBC is the first step for all children in need of a transplant to receive the hope and the best chance for treatment. KBC's unyielding dedication is to continue to fight for these kids, working to provide hope and deliver a cure to each and every child with cancer. Our ability to continue our work depends on the generosity of our community to identify marrow donors for the 75% of children who will not find a compatible match in their family. Families rely on us to increase their child's chance of identifying that perfectly matched donor, allowing them the hope they deserve - and time. Today, the needs of the community are loud and clear, once a donor is identified for their child these families don't want to have to leave their homes, family members, often even separating parents, leaving one behind to work, to travel out of town or out of state for their child to receive the only treatment to keep their child alive. They want to have a transplant center here without compromising on the skill and medical advancements, giving their child the same odds or better of survival. Then both parents can be involved in the 100+ days - first year when close proximity to the transplant hospital is critical. One of the parents can still work. Siblings can still go to their schools. Yet they can all come together and be there with the ill child during the high-risk hour-by-hour times. These two aspects of Kids Beating Cancer's mission are critical to a positive out come for not only the ill child but to keep the family unit in tack and strong."

Governance

BOARD CHAIR

Margaret Guedes

Kids Beating Cancer

Term: Sept 2015 - Sept 2017

BOARD LEADERSHIP PRACTICES

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices. Self-reported by organization

Yes

BOARD ORIENTATION & 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 & 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?