The National Children s Cancer Society. Lexi Chopp

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1 The National Children s Cancer Society Lexi Chopp

2 NCCS mission is to improve the quality of life for children with cancer and their families worldwide. We serve as a financial, emotional, educational and medical resource for those in need at every stage of their illness and recovery. In the United States, we ease the financial burdens that accompany major illness; give crucial support and comfort; and address the challenges of survivorship. Abroad we provide life saving pharmaceutical drugs, medical supplies and equipment to facilities that treat children with cancer.

3 We serve as a financial resource for those in need at every stage of their illness and recovery. Treating and caring for a child with cancer often creates a large financial burden on families and caregivers

4 Pediatric Oncology Program NCCS is the leading provider of financial support for families of children with cancer in the U.S. providing direct financial aid to families of children with cancer for both treatment and supplemental expenses. During past two decades: $51 million distributed to helping over 28,000 children battling cancer During 2010 over 4,200 families were helped by the Pediatric Oncology Program

5 How we Help Transportation for the child to and from treatment; cars, train, plane Health insurance premiums Expenses which are medically necessary standard of care, not covered by health insurance Meals for parents during child s hospitalization Phone cards An application is on the NCCS website and support is based on criteria met

6 We serve as an emotional resource for those in need at every stage of their illness and recovery The emotional support the NCCS provides is vital to managing the Chaos that cancer can inflict upon a family s life. Upon receiving the initial application, NCCS assigns a case manager who is responsible for determining how the family can best be helped. The NCCS case managers become an important part of the family s support network throughout their cancer journey

7 Global Outreach Program NCCS established Global Outreach Program to address inadequate medical care throughout the globe More than 160,000 children throughout the world are diagnosed with cancer With assistance from more than 80 corporate partners NCCS provides: 1. Cancer-related pharmaceuticals 2. Medical supplies 3. supportive-care products 4. Medical equipment to hospitals and clinics throughout the U.S. Since 1993 distributed more than $245 million donated product to 58 facilities in 41 countries

8 We serve as an educa1onal resource for those in need at every stage of their illness and recovery. The Beyond the Cure Program is designed to help childhood cancer survivors integrate the cancer experience into their new lives as survivors. Through educa;on programs designed to meet the needs of childhood cancer survivors they are equipped with resources to advocate for the care they may need throughout their lives.

9 Beyond the Cure Survivorship Program Sponsors: Educational material Free web conferences on survivorship issues Survivorship conferences throughout the U.S. Maintains a comprehensive database which includes an interactive tool that provides information on possible late effects Scholarships

10 Late Effects - Side effects of cancer treatment that appear months or years after treatment has ended. Late effects include physical and mental problems and second cancers. What causes Late Effects Leukemia Brain Tumor Tumor Treatment Chemotherapy Radiation Surgery BMT Child s Attributes Age Gender Genetics

11 Survivor-related barriers to appropriate follow-up care Age at diagnosis Invulnerable to late effects Parents manage treatment Parents and survivors want to move on Financial Lack of information knowledge of late effects Other - economic (missing work, cost of travel, childcare), culture, spiritual belief

12 WHAT WE KNOW? There are over 300,000 childhood cancer survivors in the U.S. today Studies estimate that 2/3 of survivors have at least one chronic or late-occurring complication of their cancer therapy, with about one third having serious or lifethreatening complications The risk of chronic health conditions is high such as a second cancers or cardiovascular disease. Condition increases over time and does not appear to plateau 50-60% of children treated for cancer will have some risk of neurocognitive impairment 10 to 20 % of individuals show signs of psychological maladjustment, manifested as mood disturbances, behavioral problems, and somatic distress

13 NCCS Publications Sammie s New Mask-A Coloring Book for Friends of Kids with Cancer Parent Guide Adolescent and Young Adult Guide Materials are free of charge and can be downloaded from our website

14 Web Conferences

15 Beyond the Cure Regional Conferences A standardized program that meets the recommendations of the President s Cancer Panel and the Institute of Medicine A heightened awareness of late effects and their implications for long term health with up-to-date research and information Survivorship programs into areas where they previously did not exist Recognition of the survivorship conferences in the survivorship community that have come to be an expected event Assistance with conference planning for each event, help recruit experts in the field, help market their program and provide print pieces on survivorship Funding

16 Upcoming Events

17 New Resources

18 We serve as an medical resource for those in need at every stage of their illness and recovery Late Effects Assessment Tool Online, user-friendly interactive tool that can be accessed anywhere in the world Provides information on potential complications and risk as a result of a cancer diagnosis and treatment Offers lifelong tips for wellness and health management with survivor s unique needs in mind Profile can be shared with survivor s physician

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20 Chemotherapy Ara-C- All Ara-C (Cytarabine, Cytosine arabinoside) Potential late-effects 1. May affect the brain w hich may lead to seizures and/ or learning difficulties. The learning late effects of childhood cancer are detected over time, and new problems may be noticed as children become older. This does not suggest that things are getting worse; instead, it suggests that the child's brain is not developing and growing at the same pace a,s those of their peers. Children treated for cancer may not reach cognitive and developmental milestones at the same rate as other children their age. Symptoms of learning difficulty Difficulties in processing information Difficulties w ith concentration and attention Difficulties w ith visual-motor integration Difficulties w ith memory both visual and "working" Difficulties w ith organization and planning Recommendations Evaluation by a neurologist Neuropsychological testing if school difficulties develop Prevention Tips Monitor school performance carefully and pursue formal evaluations if difficulties w ith school or behavior occur Evaluation by a neurologist if seizures develop If school difficulties develop, neuropsychological testing is recommended yearly

21 Beyond the Cure Scholarship Program Until a cure is found it is my dream that I can help children fight their battle, putting their name in place of my life s motto--- Cancer ATTACKED- Cancer TOOK- Cancer LOST- CASSIE SURVIVED!!!!!! Because of cancer, I ve been given extraordinary opportunities not common to most teens, my willingness to be open and honest about my experiences encourages others and continues to open doors of opportunity. My diagnosis never became who I am but has given me the strength, courage, optimism, an open mind and determination to succeed even when thrown a curveball.

22 Beyond the Cure Survivorship Video The need: Beyond the joy of a child who has been freed of cancer lies a little known fact: the same treatment that cures childhood cancer often causes undesirable late effects even years after treatment has ended. NCCS needed a creative way to reach survivors and their parents.

23 October 11, 2010 NCCS became a recipient of a $25,000 grant A partnership was created to help make children diagnosed with cancer aware of survivorship issues and the support NCCS provides

24 February, 2011 met with Scholarship recipients to create video

25 June, 2011 Began distribu1on of the Beyond the Cure Survivorship video Flashdrives continue to be distributed to long-term follow-up clinics, conferences, posted on NCCS website and on the internet

26 Thank You!