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Washington University School of Medicine St. Louis, MO Jennifer Ivanovich, MS Washington University School of Medicine St. Louis, MO Jennifer Ivanovich, MS

The Golden Circle WHY HOW WHAT Start With Why by Simon Sinek The Golden Circle WHY HOW WHAT Start With Why by Simon Sinek

Vision, Mission and Operations WHY We believe in challenging the status quo to bring Vision, Mission and Operations WHY We believe in challenging the status quo to bring about positive change for young adults with cancer. HOW The way we will bring about positive change is by our persistent pursuit of research, targeted education, support and advocacy with young survivors engaged as our most essential partners. WHAT We build diverse approaches to reach young adults and lead clinical research focused on their aggressive disease.

Education Advocacy Research WHY HOW WHAT Support Education Advocacy Research WHY HOW WHAT Support

Young Women’s Breast Cancer Program History - 2001, Support and education program initiated - Young Women’s Breast Cancer Program History - 2001, Support and education program initiated - 2005, Research program implemented - 2011, CDC funding for support & education programming - Needs assessment completed Outreach - ~1, 400 survivors in St. Louis region - ~2, 700 survivors throughout the United States engaged in our research program Regional program with national outreach

Local Needs Assessment - Findings • The majority of women currently engaged in our Local Needs Assessment - Findings • The majority of women currently engaged in our program have completed their primary cancer treatment. • Minority young survivors and women with limited financial resources are not adequately represented. • Young women wish to connect with other young survivors for peer support and information. • Targeted support programming for women with metastatic breast cancer does not currently exist in St. Louis region. • Young women desire targeted information that is easy to manage. • Young survivors stated it was difficult to find targeted programs. • There is a lack of support and education programming for young adults with cancer in St. Louis region.

YWBCP: Support programming Monthly support / network group Peer Network Risk Assessment Detection Diagnosis YWBCP: Support programming Monthly support / network group Peer Network Risk Assessment Detection Diagnosis Prevention Cancer Care Continuum Treatment Post treatment Survivorship Cancer recurrence / metastatic disease End-of-life

YWBCP: Support programming Monthly support / network group Peer Network Coach Program Psychosocial support YWBCP: Support programming Monthly support / network group Peer Network Coach Program Psychosocial support program Risk Assessment Detection Diagnosis Prevention Cancer Care Continuum Treatment Post treatment Survivorship Cancer recurrence / metastatic disease End-of-life

YWBCP: Educational activities Guidance journal Survivor Magazine Educational Symposium Risk Assessment Detection Diagnosis Prevention YWBCP: Educational activities Guidance journal Survivor Magazine Educational Symposium Risk Assessment Detection Diagnosis Prevention Cancer Care Continuum Treatment Post treatment Survivorship Cancer recurrence / metastatic disease End-of-life

YWBCP: Educational activities Guidance journal Together Magazine Survivorship Program Educational Symposium Genetics Navigation Tool YWBCP: Educational activities Guidance journal Together Magazine Survivorship Program Educational Symposium Genetics Navigation Tool Risk Assessment Detection Diagnosis Prevention Cancer Care Continuum Treatment Post treatment Survivorship Cancer recurrence / metastatic disease End-of-life

YWBCP: A different approach Young survivor art program Center of Creative Arts Enriching lives YWBCP: A different approach Young survivor art program Center of Creative Arts Enriching lives and building community through the arts Barnes-Jewish Hospital

YWBCP: Research Initial questions 1. What are the as yet unidentified genetic factors that YWBCP: Research Initial questions 1. What are the as yet unidentified genetic factors that contribute to risk for breast cancer, and in particular breast cancer at a young age? ü laboratory (molecular genetic) studies 2. How common is familial breast cancer in early-onset disease, and among those women with a positive family history, how many have BRCA 1 or BRCA 2 gene mutation? ü family studies 3. How do we communicate clinical whole genome sequencing results to individuals and families? ü communication studies

YWBCP: Research Criteria and study requirements - Diagnosed with invasive breast cancer < 40 YWBCP: Research Criteria and study requirements - Diagnosed with invasive breast cancer < 40 - Consent, blood specimen, medical records, and family cancer history Enrollment status - 2, 701 young survivors have asked to participate - 1, 792 (66%) young survivors enrolled - 37 years – average at diagnosis - 1, 607 parents, sisters enrolled Love / Avon Army of Women partnership

YWBCP: Research Racial background of young survivors YWBCP: Research Racial background of young survivors

YWBCP: Research – Molecular studies Copy Number Variants € Exome Sequencing CNV discovery Nible. YWBCP: Research – Molecular studies Copy Number Variants € Exome Sequencing CNV discovery Nible. Gen HD 2. 1 array Prioritize high confidence CNVs for follow-up studies • de novo variants • Recurrent “rare” variants involving coding sequences • CNVs that include genes known to be important in breast biology/tumorigenesis 120 BRCA 1 and BRCA 2 negative probands and parents 384 probands, BRCA 1, 2 negative and strong breast cancer family history Goodfellow, Graubert, Ivanovich; Avon Foundation, NIH R 01 Goodfellow, Mardis, Borecki, Ivanovich WUSM Genome Center funding

YWBCP: Research – Family studies Heritability Goodfellow, Ivanovich, departmental funding YWBCP: Research – Family studies Heritability Goodfellow, Ivanovich, departmental funding

YWBCP: Research – Communication studies Communicating sequencing results -NIH R 01 funding anticipated to YWBCP: Research – Communication studies Communicating sequencing results -NIH R 01 funding anticipated to begin in June, 2012 - Kaphingst, Dressler, Goodman, Ivanovich, Goodfellow, Biesecker

The Young Women’s Breast Cancer Program Kim Selig, MSW -- Program Coordinator 314 -747 The Young Women’s Breast Cancer Program Kim Selig, MSW -- Program Coordinator 314 -747 -7156 [email protected] wustl. edu Jennifer Ivanovich, MS -- Program Director 314 -454 -5076 [email protected] wustl. edu Paul Goodfellow, Ph. D – Research Program [email protected] wustl. edu Washington University School of Medicine Box 8100; Siteman Cancer Center 660 S. Euclid Ave St. Louis, MO 63110