Human Services

Kids Beating Cancer, Inc.

  • Orlando, FL
  • www.kidsbeatingcancer.com

Mission Statement

Kids Beating Cancer provides resources and support for children with cancer, leukemia and related life threatening diseases throughout the treatment process, regardless of hospital affiliation. By providing the pre-transplant testing and donor identification, costs never covered by Medicaid and only partially covered by insurance, This testing is provided at no cost at the Kids Beating Cancer Pediatric Transplant Center.

Main Programs

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

service areas

National

Self-reported by organization

ruling year

1992

chief executive for fy 1992

Mrs. Margaret Voight Guedes

Self-reported by organization

Keywords

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

Self-reported by organization

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EIN

59-3136203

Also Known As

N/A

Contact

Cause Area (NTEE Code)

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

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?

Impact statement

TOP 3 ACHIEVEMENTS in 2014 Fiscal yearApril 2014, Kids Beating Cancer establishes a Development Advisory BoardMay 2014, International Inventor, Sir Dr. NakaMats Pays Special Visit to the Kids Beating Cancer Pediatric Transplant Center at Florida Hospital for Children, and announces Kids Beating Cancer as his Exclusive Worldwide Charity of Choice. In turn, Kids Beating Cancer invited Dr. NakaMats to be the Honorary Chairman of Kids Beating Cancer Development Advisory Board. His commitment as Honorary Chairman is to bring awareness to the needs of pediatric patients with bone marrow cancer and the treatments available to them at the Kids Beating Cancer Pediatric Transplant Center.September, 2014 Kids Beating Cancer and Florida Hospital for Children unveil the Kids Beating Cancer Pediatric Transplant Center Donor Wall and the John Voight Bronze Sculpture.During the unveiling Kids Beating Cancer pledged $500,000 to establish a new program at the KBC PTC, "Food for Families" meal vouchers for families while their child is hospitalized TOP 4 GOALS for 2015Hire Director of Development Hire one new position, an experienced Children's Program and Outreach staffExpand funds raised by 25% to cover to expanding number of children needing access to our programs and services critical to their survival and tolerance during treatmentImplement knowledge gained through a Capacity Building grant with the new Development Advisory Board

Programs

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

Self-reported by organization

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 at Florida Hospital for Children, the only pediatric transplant center in Central Florida.

Category

Health Care, General/Other

Budget

$350,000.00

Population Served

Children and Youth (0 - 19 years)

Blacks

Poor/Economically Disadvantaged, Indigent, General

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 cord blood transplant, and their families, with information, play therapy for the kids, and individualized support services to survive the day-to-day, critical, and complex needs that occur while their child is in treatment. This unique program empowers the family with the tools to better cope and survive as a family unit, regardless of the outcome of the ill child. KBC provides; teddy bears to children ""Bunky's Pals"" Nationwide, provides blankets and toys to children during treatment in Florida, and in Central Florida provides therapeutic play activities for children, holiday parties, special celebrations, and outings for children and their families.

Category

Health Care, General/Other

Budget

$200,000.00

Population Served

Children and Youth (0 - 19 years)

Other Named Groups

Poor/Economically Disadvantaged, Indigent, General

Program 3

"My Room"

""My Room"" program, provides a 'safe, fun, place' during a child's transplant. A customized, themed hospital room done according to each child's preference, such as Disney Princess, Hello Kitty, or Toy Story with bedding, 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.

Category

Human Services, General/Other

Budget

$120,000.00

Population Served

Children and Youth (0 - 19 years)

Poor/Economically Disadvantaged, Indigent, General

Other Named Groups

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, from any of the cafeterias, as well as participating restaurants.

Category

Food, Agriculture & Nutrition

Budget

$146,000.00

Population Served

Poor/Economically Disadvantaged, Indigent, General

Ethnic/Racial Minorities -- General

Program 5

"Ballet for Kids"

Kids Beating Cancer has launched a new program in partnership with Orlando Ballet, which is already underway with 20 Kids Beating Cancer children participating from Arnold Palmer, Florida Hospital for Children, and Nemours. Orlando Ballet is providing special ballet classes; where KBC children will learn at their own pace, and at no cost to the families. The practice of ballet provides an outlet for kids to build self-confidence and concentration. Kids that are going through cancer therapy benefit from ballet, as it increases flexibility, improves posture, and strengthens their muscles. Our goal is to raise the sponsorship for these 20 children and to exand to an additional 10 children within 2015 to be able to attend the special Kids Beating Cancer ballet classes, funding all expenses for the families, including the ballet attire and gas to and from the classes throughout the year.

Category

Budget

$30,000.00

Population Served

Charting Impact

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

Self-reported by organization

  1. What is the organization aiming to accomplish?
    Kids Beating Cancer (KBC) 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. KBC's programs have traditionally been based on two areas of emphasis; 1) reducing the financial barriers to treatment. 2) Support systems to mitigate the tremendous family stress associated with transplantation or cancer treatment. Most recently, a third emphases has been developed with the opening of the Kids Beating Cancer Pediatric Transplant Center, a unique facility providing treatment for children needing transplants to survive their disease. 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 to $100,000 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, at any of the cafeterias and participating restaurants, 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 - provides a variety of weekly opportunities for participation; family parties, fun activities, milestone celebrations, toys, bicycles, a Bunky Bear®, and basic necessity support to survive the day-to-day, critical, and complex needs that occur while their child is in treatment. BALLET FOR KIDS - In partnership with Orlando Ballet School, Kids Beating Cancer children can attend special ballet classes; learn at their own pace, and at no cost to the families. The practice of ballet provides an outlet for kids to build self-confidence and concentration. Kids that are going through cancer therapy benefit from ballet, as it increases flexibility, improves posture, and strengthens their muscles.BALLET FOR KIDS - In partnership with Orlando Ballet School, Kids Beating Cancer children can attend special ballet classes; learn at their own pace, and at no cost to the families. The practice of ballet provides an outlet for kids to build self-confidence and concentration. Kids that are going through cancer therapy benefit from ballet, as it increases flexibility, improves posture, and strengthens their muscles. OUTREACH AND EDUCATION - a trusted resource for the community and the children and families during treatment and beyond, KBC educates communities and families about the step-by-step process of 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 facility, offering complete medical care to children who can now get a transplant in Central Florida.
  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 has some unique qualities, 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 beginning 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 Gala. You can see them at the Christmas party. 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 KBC PTC at FHFC. 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 haul. 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 has organized in 2014 and going forward a large Development Advisory Board (DAB) of individuals of influence in the general and corporate community to participate in the building and growth of KBC's financial program. 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. In 2014, KBC has recruited 40 diverse individuals who represent the leadership of the Central Florida community and are willing to commit to the KBC mission. The program consists of several steps: 1) recruitment requires a statement of personal commitment both financially and of personal time and committed effort. 2) Commitment to a series of educational activities to learn about the mission of KBC and the medical illnesses it supports. 3) Opportunities to participate as volunteers for KBC sponsored children and family activities. 4) Opportunities to participate in planning and executing the mission and long and short-range goals of KBC.
  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 2014, 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. 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

National

Self-reported by organization

Social Media

@https://www.facebook.com/KidsBeatingCancer

@https://twitter.com/KidsBeatCancer

@https://youtu.be/3a-AV_S-dcs

Funding Needs

The most pressing needs in 2015 are to fund pre-transplant testing cost to determine if a child is transplant eligible. These cost are never funded by Medicaid for children with one of 80 different malignant and non-malignant diseases a marrow or stem cell transplant is the best and only treatment towards a cure though our ""FUND THE MATCH"" program. ""FUND THE MATCH"" removes the financial barriers to care by funding the average pre-transplant cost per patient of $40,000, that is never covered by Medicaid. By removing these financial barriers to care, ""Fund the Match"", allows children access to a life saving transplant when they need it, without delay. The second most pressing need is for outreach and education to these families, informing them of treatments available to their child. With increased funding more families would have the opportunity to have their child evaluated, possibly releasing them from years of pain, hospitalizations and eventual death.The third most pressing need is to fund non-medical expenses for children during transplants and other intense treatment when their length of stay in the hospital for the first year is a minimal of 100 days. The families are faced daily with new line items in their budget that can throw any family into financial ruin; just a few of those items are increased food expenses for special dietary needs, food expenses while in the hospital when unable to leave their child, gas, and co-pays. The forth most pressing need is to increase staff size to meet the growing needs in the community to provide services for more patients and families, and to identify a volunteer coordinator to manage the hundreds of volunteers willing to serve and handle program and fundraising tasks allowing KBC to grow and still keep overhead cost at a minimum. The fifth need is continue Board Development and diversification, committee involvement, and implement the new strategic plan.

Affiliations + Memberships

AFP (Association of Fundraising Professionals)

Chamber of Commerce

photos


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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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CHIEF EXECUTIVE FOR FISCAL YEAR

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 CEO

"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 2013 - Sept 2015

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?