Program:
Marrow for Kids Marrow Transplant Recruitment Program
- Budget:
-
$100,000
- Category:
-
Human Services
- Population Served:
-
Ethnic/Racial Minorities -- General
-
Ethnic/Racial Minorities -- General
-
Poor/Economically Disadvantaged, Indigent, General
Program Description:
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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:
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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 fund compatible 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 80 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 Registry monitors testing results, the matching process and every stage of the donor work-up, to collection, and to the 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 and only form of treatment they could access with a perfectly match volunteer donor.
Program:
"Fund the Match" Pediatric Marrow Transplant Program
- Budget:
-
$350,000
- Category:
-
Health Care
- Population Served:
-
Children and Youth (infants - 19 years.)
-
Ethnic/Racial Minorities -- General
-
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 -$75,000 per child, often higher, allowing access to a life saving transplant,
without delays. “Fund the Match” program allows children to access the treatment offering their 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 80 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 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 as a 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:
13 children in Central Florida, since June of 2011, 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 for Kids
- Budget:
-
$225,000
- Category:
-
Human Services
- Population Served:
-
Poor/Economically Disadvantaged, Indigent, General
-
Other Named Groups
-
Poor/Economically Disadvantaged, Indigent, General
Program Description:
Karing for 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 through “Bunky’s Pals” Nationwide, and provides blankets and toys to children during treatment in Florida. In Central Florida, Karing for Kids provides therapeutic play activities for children, holiday parties, special celebrations, and outings for children and their families throughout the year.
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, doubling 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 will open. 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:
Program:
"My Room"
- Budget:
-
$125,000
- Category:
-
Human Services
- Population Served:
-
Poor/Economically Disadvantaged, Indigent, General
-
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.