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

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

3. 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. Vision, Mission and Operations

4. Research AdvocacySupport Education WHY HOW WHAT

5. 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 Young Women’s Breast Cancer Program

6. 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.

7. YWBCP: Support programming Cancer Care Continuum End-of-lifePost treatment Survivorship TreatmentDiagnosis Risk Assessment Prevention Detection Cancer recurrence / metastatic disease Peer Network Monthly support / network group

8. YWBCP: Support programming Cancer Care Continuum End-of-lifePost treatment Survivorship TreatmentDiagnosis Risk Assessment Prevention Detection Cancer recurrence / metastatic disease Monthly support / network group Peer Network Coach Program Psychosocial support program

9. YWBCP: Educational activities Cancer Care Continuum End-of-lifePost treatment Survivorship TreatmentDiagnosis Risk Assessment Prevention Detection Cancer recurrence / metastatic disease Guidance journal Survivor Magazine Educational Symposium

10. YWBCP: Educational activities Cancer Care Continuum End-of-lifePost treatment Survivorship TreatmentDiagnosis Risk Assessment Prevention Detection Cancer recurrence / metastatic disease Together Magazine Guidance journal Educational Symposium Genetics Navigation Tool Survivorship Program

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

12. 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? 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 BRCA1 or BRCA2 gene mutation? family studies 3. How do we communicate clinical whole genome sequencing results to individuals and families? communication studies

13. 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 age at diagnosis - 1,607 parents, sisters enrolled Love / Avon Army of Women partnership

14. YWBCP: Research Racial background of young survivors

15. Copy Number VariantsExome Sequencing Goodfellow, Graubert, Ivanovich; Avon Foundation, NIH R01    120BRCA1 and BRCA2 negativeprobands and parents CNV discovery NibleGenHD 2.1 array Prioritizehigh confidence CNVs for follow-up studies de novovariants Recurrent “rare” variants involving coding sequences CNVs that include genes known to be important in breast biology/tumorigenesis 384 probands, BRCA1,2 negative and strong breast cancer family history Goodfellow, Mardis, Borecki, Ivanovich WUSM Genome Center funding YWBCP: Research – Molecular studies

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

17. YWBCP: Research – Communication studies Communicating sequencing results -NIH R01 funding anticipated to begin in June, 2012 - Kaphingst, Dressler, Goodman, Ivanovich, Goodfellow, Biesecker

18. The Young Women’s Breast Cancer Program Kim Selig, MSW -- Program Coordinator 314-747-7156 seligk@wudosis.wustl.edu Jennifer Ivanovich, MS -- Program Director 314-454-5076 ivanovichj@wudosis.wustl.edu Paul Goodfellow, PhD – Research Program goodfellowp@wudosis.wustl.edu Washington University School of Medicine Box 8100; Siteman Cancer Center 660 S. Euclid Ave St. Louis, MO 63110