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Kids Beating Cancer, Inc.

AKA  N/A
Orlando, FL
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&1002; Forms 990 2012, 2011, and 2010 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

Kids Beating Cancer, Inc.
Also Known As: N/A
Physical Address: Orlando, FL 32803 
EIN: 59-3136203
Web URL: www.kidsbeatingcancer.com 
NTEE Category: P Human Services
P99 Human Services - Multipurpose and Other N.E.C.
E Health—General & Rehabilitative
E60 Health Support Services
G Disease, Disorders, Medical Disciplines
G30 Cancer
Ruling Year: 1992 


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Mission Statement

TO BEAT CHILDHOOD CANCER, ONE KID AT A TIME. Kids Beating Cancer's vision is to be the resource so that children diagnosed with cancer, leukemia or related life threatening diseases will receive the best treatment regardless of their family's financial situation, while providing support for families as they face the challenging journey towards a cure.

Legitimacy Information

This organization is registered with the IRS.

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

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Annual Revenue & Expenses (GuideStar Exchange,
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February 2014)

Fiscal Year Starting: August 01, 2013
Fiscal Year Ending: July 31, 2014

Total Revenue --
Total Expenses --

Revenue & Expenses

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Balance Sheet (IRS Form 990)

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Leadership (GuideStar Exchange,
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February 2014)

Mrs. Margaret Guedes

Term:

Since Aug 1992

Profile:

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.



Leadership Statement:

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.

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February 2014)

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February 2014)

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Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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People information was last updated by the nonprofit in February 2014

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Programs

Program: Marrow for Kids Marrow Transplant Recruitment Program (GuideStar Exchange,
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February 2014)

Budget:
$200,000
Category:
Human Services, General/Other
Population Served:
Children and Youth (0 - 19 years)
Ethnic/Racial Minorities -- General
Poor/Economically Disadvantaged, Indigent, General

Program Description:

Kids Beating Cancer's Marrow for Kids Program and marrow donor recruitment efforts in the community focus on increasing the diversity of tissue types available so all patients in need can have equal access to a cure, while recruiting people onto the national marrow registry, who are willing to help any patient in need. Kids Beating Cancer provides community outreach & education on marrow and blood stem cell donation and transplantation and funding the DNA lab testing necessary to identify family and un-related donors, cost never covered by Medicaid.

Program Long-Term Success:

More patients monthly and annually will get the transplants they need to have the only hope for a cure through Kids Beating Cancer's efforts to identify donors and fund the testing of family and un-related potential donors.

Program Short-Term Success:

For every new volunteer tested, they may soon or one day match a patient who does not have a match in the family and will be the one and only hope for that patient to access the treatment needed all because a volunteer was education, committed and agree to donate to a stranger through Kids Beating Cancer. Only 25% of the time is a matching marrow donor found in the family. Of the 75% that search the national registry not all find a donor because the registry is not large or diverse enough to meet the growing demand for patients with over 72 different diseases. Minorities are especially needed and are the least likely to find a matching donor. Kids Beating Cancer is improving those odds by focusing outreach and education on the undeserved. This year's goal is to expand education to sickle cell families and offer testing and treatment for all cost not covered by Medicaid, removing years or pain and hospitalizations, allowing kids to grow up disease free.

Program Success Monitored by:

The National Marrow Donor Program monitors testing results, the matching process and every stage of the donor matching, to collection, to transplant process and makes those satastics available to Kids Beating Cancer and the pediatric transplant centers.

Program Success Examples:

In 2011 30 marrow donors Kids Beating Cancer recruited and tested were identified as perfect matches for patients waiting for their only hope for a cure. These 30 patients would have died without a transplant. They were given time and the best form of treatment they could access only with a perfectly match volunteer donor.

Program: "Fund the Match" Pediatric Marrow Transplant Program (GuideStar Exchange,
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February 2014)

Budget:
$350,000
Category:
Health Care, General/Other
Population Served:
Children and Youth (0 - 19 years)
Blacks
Poor/Economically Disadvantaged, Indigent, General

Program Description:

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.

Program Long-Term Success:

Children will be able to be transplanted in Central Florida with friends and family by their side. Siblings will be able to stay in school. Parents will be able to keep their homes and their jobs. 100% of children with one of 72 different malignant and non-malignant life threatening diseases, curable by marrow or cord blood transplantation will have the hope of a cure for the first time in Central Florida without having to travel out of town or state to get the only treatment for their child. Families can stay together in support of their child, brother or sister. Families that will be torn apart by distance for a minimal of 100 days at a distant hospital can now pull together a s family, stay in tact, and support the ill child while having the strength and ability to cope with and overcome their child's disease as a family.

Program Short-Term Success:

12 children in Central Florida received the hope of a cure and a second chance at life with the support of Kids Beating Cancer's "Fund the Match" program and the Kids Beating Cancer Pediatric Transplant Center at Florida Hospital for Children. During the next fiscal year transplants could double with appropriate funding.

Program Success Monitored by:

Through our partnership with Florida Hospital For Children, we will be informed on the needs of the patients not covered by insurance, the number of children transplanted and the cost funded and services made available through our support of the Pediatric Transplant Center.

Program Success Examples:

12 children since June 2011 have been transplanted with the support of Kids Beating Cancer's "Fund the Match" program, funding and supporting services for the children and their families throughout the year.

Program: Karing 4 Kids (GuideStar Exchange,
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February 2014)

Budget:
$200,000
Category:
Health Care, General/Other
Population Served:
Children and Youth (0 - 19 years)
Other Named Groups
Poor/Economically Disadvantaged, Indigent, General

Program Description:

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.

Program Long-Term Success:

The long-range goals for long-range success, would be to have the funding to have items on hand and activities, outings and parties to lift the spirits and meet the needs of every child during cancer, leukemia and related blood diseases such as sickle cell and aplastic anemia during their hospital treatments for all 3 hospitals locally in Central Florida, totally 600+ children annually. We track the number of children we serve today and know we are meeting only half of the hematology patients' needs, however, we are serving 100% of the patients treated locally for marrow transplantation. But again, as the transplant center grows annually, increasing the 12 patients seen in its first year, each year for not only Central Florida patients, but throughout Florida, our funds must also grow. We know from the families and the hospital referrals, our services are greatly appreciated by the families.

Program Short-Term Success:

The short range goal is to expand services to the growing number of patients locally and in surrounding counties who are coming to Central Florida to investigate our pediatric marrow transplant program, the first and only in Central Florida. We know that our children's support services bring joy, comfort and reduce fear to the many children we reach. However, in August Central Florida's 3rd children's hospital opened. We know we will need to increase services with its opening. With increased funding we can double the number of children served, reaching more children being treated at all three of the children's hospitals in Central Florida.

Program Success Monitored by:

Kids Beating Cancer Medical Board of Advisors and Child Life staff at the Kids Beating Cancer Pediatric Transplant Center at Florida Hospital for Children monitor the needs of the children, the distribution of items requested, and notifying KBC when special circumstances arise and they request us to uplift one of the children's spirits with special delivery and surprise celebrations.

Program Success Examples:

Since opening the Kids Beating Cancer Pediatric Transplan Center in October of 2012, 476 children were admitted during 1,187 hospital patient days. During 2013, 7 patients have had pre-transplant work-ups not funded by Medicaid, covered by Kids Beating Cancer's "Fund The Match" program commitment.

Program: "My Room" (GuideStar Exchange,
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February 2014)

Budget:
$120,000
Category:
Human Services, General/Other
Population Served:
Children and Youth (0 - 19 years)
Poor/Economically Disadvantaged, Indigent, General
Other Named Groups

Program Description:

""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.

Program Long-Term Success:

For evaluation of long-term success of the ""My Room"" program the hospital Child Life staff will interview families and their ill child to determine satisfaction and if other areas of need to report back to Kids Beating Cancer. Services we are able to supply depend on our ability to raise the funds needed. With the new 8-bed unit opening August 2012, we know that we will need to double our services every year to meet the growing number of children that will be served through the Kids Beating Cancer Pediatric Transplant Center. We know that even though the transplant treatment is a very long process, initially lasting months in the hospital, with some cases having years of follow-ups, the impact of a positive or negative experience with the transplant hospitalization, regardless of outcome on the ill child, will be life-long. Our goal will be to continue to evaluate and provide for the areas of greatest need for the most positive outcome for the children.

Program Short-Term Success:

Hospital Child Life, Social Workers and Nurses interact with the families of an ill child while hospitalized to understand the immediate needs. The struggles in coping with the day to day stresses of the long, intense and complex transplant and required hospitalization for months, is discussed upfront with the families and many of the expected needs can be addressed at the time. Hearing and living it, however, is totally different. When a child is faced with changes from the disease and the harsh treatment, overcoming pain is easier than the challenges of being away from the comfort and security of home. With the recommendation of the experts, making the child's hospital room most like home, with activities that bring smiles of joy and comfort, is the best medicine. The simple additions, of cozy blankets, bedspreads, soft cuddly characters, toys that occupy the mind will bring the calmness needed to allow the true medicine to do its job, riding the child's body of their disease.

Program Success Monitored by:

Kids Beating Cancer in partnership with Hospital Child Life Services, Nurses, Social Workers and Physicians monitor the needs of the ill children and their families. Requests for patient's rooms before their admission date are sent to us to provide. The requests and benefits of the "My Room" services are determined by the remarks and requests of every patient in the pediatric transplant center. When family members and hospital staff make suggestions for needs and items, Kids Beating Cancer provides all that it can to meet the needs no other organization provides.

Program Success Examples:

Families have told us we have brought joy and comfort to their child during the most stressful time of their little lives. The greatest measure of success is the smiles on the children's faces and notes of appreciation from the children and their parents on how we lifted their child's spirits and improved their long journey towards a cure.
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Impact Summary from the Nonprofit

TOP 5 ACHIEVEMENTS in 2012 - 2013 Fiscal yearOctober 2012, Kids Beating Cancer Pediatric Transplant Center at Florida Hospital for Children accepts its first patient 500 Admissions to the Kids Beating Cancer Transplant Center 21 of these children received a transplant through Kids Beating Cancer by funding pre-transplant medical cost not covered by insuranceAdded new Events, A Mother's Day Party for patients and their Moms, LEGOLAND Day for children and their families, a new event A Spoonful of Sugar, Fashion Show & High Tea, the patients modeled children's clothes, and a Fall Spooktacular party at SeWorld for the children and familiesTOP 3 GOALS for 2013Hire two new positions, an experienced Director of Development and a new 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 Board of Directors and staffSince 1992:Over 37,000 potential donors have been recruited and DNA testedOver 7,000 children servedOver $10MM dollars raised
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