Jennifer Ivanovich, MS

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

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

3. 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.

4. Research Education WHY Awareness Support HOW WHAT

5. Distinguishing factors among YBCS

6. Initial Logic Model – September 2011 Logic model for YWBCP

7. Initial needs assessment – March 2012 • 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.

8. Outcomes – Engagement and Outreach Regional program with national outreach Engagement • 2001, Support and education programming initiated • 2005, Genetics research program implemented • 2011, CDC funding for support & education programming • 2013, Genome communication research implemented Outreach • 1,500 survivors in St. Louis region • 3,100 survivors throughout the United States interested in our research program • 2,200 young survivors have participated in genetics study • 1,925 family members have participated in genetics study

9. Outcomes – Coach • Coach Program • Program Coordinator meets with young women newly diagnosed in surgery and oncology clinics • Program materials provided • Information added to electronic and print distribution list • Significant impact on outreach • Met with over 310 young women newly diagnosed • Connect with women early in treatment process • Increase diversity of women reached • Peer Network • Capitalize on survivor “good will” and knowledge • Train young survivors to serve as a peer mentor to another young survivor • Training focused on confidentiality and active listening

10. Outcomes – Support • Monthly support programming – since October 2011 • General format usually consists of speaker presentation with time for networking • Topics identified by young survivors. Examples include, • Fertility --- Sexuality --- Genetics --- Mindfulness --- Acupuncture • Survivors in their 20 & 30s--- Restorative yoga --- Healthy nutrition • Targeted support programming • Bi-weekly structured psychosocial support program for young women with metastatic breast cancer, Fall 2012 • Young women with metastatic breast cancer symposium • Held March 2014 • Targeted programming provides opportunity to address heterogeneity • Siteman Cancer Center Counseling Services • Referrals to psychologists for free psychological counseling

11. Outcomes – Practical Support • Cancer Survivor Resource Guide • AYA cancer support, general cancer support, creative arts, employment and insurance, environmental, family support, financial, general health, grief support, hospice transportation & lodging

12. Outcomes – Educate • Annual education symposium: 2012, 2013 • Next symposium is set for September 13, 2014 • Anticipate 100 young survivors in attendance • Together magazine • Our young survivor magazine • New editions published in 2012, 2013, 2014 • Last edition mailed directly to ~ 4,000 young survivors • Family history guide • Marketed directly to ~4,000 young survivors • Currently in the process of recording videos regarding genetic testing • The woman is stronger than the disease • Our young survivor journal • Continued distributionlocally and nationally e.g. Sister Network in Washington DC

13. Outcomes – Transition • Young Adult Cancer Survivor Exercise Program • Weekly strength and cardio exercise program • Began September 2012 • Additional exercise groups have formed • running, tennis, pickleball • Creative Expression Program • Monthly programming held in 2012 / 2013 • INSIDE OUT: CELEBRATING CANCER SURIVORSHIP

14. Outcomes – Communication • YWBCP website: ywbcp.wustl.edu • Google analytics • Monthly e-newsletter • 600 receive e-newsletter • VerticalResponse.com • Facebook • Page and 2 closed groups • Twitter • Cancer center information center & digital messaging boards • Clinical engagement • Professional and community presentations • Local press • St. Louis Post Dispatch article June 2013

15. Sustainability • Support of Division Chief – Graham Colditz, MD • Local grant funding • Barnes-Jewish Hospital Foundation • St. Louis Men’s Group Against Cancer • Boeing St. Louis – Employee Community Funding • Local fundraising efforts • Celebrate Events … Celebrate Fitness, Celebrate Tennis, Celebrate Style • The Pink Party • Philanthropy • Local and national philanthropic efforts • Challenges / Opportunities • National grants necessary to expand staff and enhance services • Limited survivorship programming and no young adult cancer clinic at our cancer center

16. Some Lessons Learned • A sustainable infrastructure requires: • Flexibility ---- Creativity ---- Persistence • Solid grant management • A flexible program meets women in their “space” • Women with limited financial resources • Metastatic disease • A young adult cancer program must work “outside the box” • Creative arts programming • Exercise program • A young cancer survivor program achieves greater good by building stronger, diverse partnerships • “Passive” and “Active” partners • Other AYA cancer program partners

17. Moving forward

18. Thank You! Centers For Disease Control and Prevention • Special thanks to Mary Kay Solera and Vicky D’Alfonzo • Temeika Fairley, Angela Moore, Cynthia Corsino, Tiffani Mulder, Annie Brayboy, Vivian Walker, Kathy Raible DP11-1111 grantees • Mindy Carpenter, AnytaParido, Lindsay Herring, Carrie Cantrell – John C. Lincoln Health Foundation • Arin Ahlum Hanson, Janine Guglielmino– Living Beyond Breast Cancer • Donna Williams, Helen McMillan – Louisiana State University • Jennifer Thompson, Danna Averbook, Rochelle Shoretz - Sharsheret • Patty Ganz and Vickie Williams - University of California • Larry Marks, Adrian Gerstel – University of North Carolina Local and National Partners Special thanks to our young breast cancer survivors!

19. 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 Director The Ohio State University ywbcp.wustl.edu Washington University School of Medicine Box 8100; Siteman Cancer Center 660 S. Euclid Ave ; St. Louis, MO 63110