TRANSFORMING THE CHILDHOOD CANCER SURVIVOR EXPERIENCE

Additional Material

The FactsCancer is the number one disease killer of

America's children. Cancer kills more children each year than Cystic

Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.

One in 330 children will develop cancer by age 20 Although the 5 year survival rate is steadily increasing,

one quarter of children will die within 5 years from the time of diagnosis.

More than 1,750 children will be diagnosed in California this year. (~500 in the Bay Area) Average treatment plan is 2 years.

Surviving Brings Another Set of Problems Two-thirds of children who do survive face life-long

late-effects from the treatment of their disease. Of those, one quarter are classified as severe or life threatening.

Research on the emotional impact of childhood cancer finds that parents and siblings report even greater long term emotional impacts than the diagnosed child.

Childhood Cancer Diagnoses, by Type of Cancer: 2003-2005 (Source: kidsdata.org)

California 0-14 years 15-19 years

Leukemia 1,269 240

Lymphoma and Reticuloendothelial Neoplasms

313 344

Central Nervous System and Miscellaneous Intracranial and Intraspinal Neoplasms

663 151

Sympathetic Nervous System Tumors

219 LNE

Retinoblastoma 115 LNE

Renal Tumors 162 6

Hepatic Tumors 66 11

Malignant Bone Tumors 168 115

Soft Tissue Sarcomas 271 124

Germ Cell/Trophoblastic and Other Gonadal Neoplasms

155 242

Carcinomas and Other Malignant Epithelial Neoplasms

137 341

Other and Unspecified Malignant Neoplasms

LNE 13

Total for all groups combined

3,581 1,600

International Classification of Childhood Cancer*

*Steliarova-Foucher E, Stiller C, Lacour B, Kaatsch P. International Classification of Childhood Cancer, Third Edition. Cancer 2005;103:1457-67

International Classification of Childhood Cancer*

*Steliarova-Foucher E, Stiller C, Lacour B, Kaatsch P. International Classification of Childhood Cancer, Third Edition. Cancer 2005;103:1457-67

International Classification of Childhood Cancer*

*Steliarova-Foucher E, Stiller C, Lacour B, Kaatsch P. International Classification of Childhood Cancer, Third Edition. Cancer 2005;103:1457-67

Advocacy thru Alliance

Awareness Priority Transform

• Content Creation (Stories)• National Childhood Cancer

Awareness Month & Day (9/13/08)

• Endowment Campaign• Kid Specific Items• Community Integration &

Funding (Schools, Spiritual Centers, Sports Teams)

• National Action Plan• National Registry• Survivorship (treatment

complications and Late effects) addressed

• Research Investments• National Summit on Family

Centered Best Practice Business and Caregiver Models

• Electronic Health Records• Parent Advocate Tools

and Training• Parent Mentor Training• Online Community

Network• Cancer Support

Information Extended

Alliance Partner Programs

Enable

Financial support and capacity-building to community-centered initiatives that address the physical, emotional and practical challenges of cancer survivorship

Develop & Grow

Alliance Intranet and Conferences to:

• Discuss Best Practices & Challenges

• Exchange program & development details

• Provide Training

• Build Community