Advocacy

Current 

Positions

Metastatic Breast Cancer Alliance - Co-Chair, Patient/Advocate Advisory Group (PAAG)

Living Beyond Breast CancerHear My Voice Advocate & HMV 2019 Program Mentor

Susan G. Komen - MBC Patient Advisory Committee - Member

Komen Advocates In Science - Member

Ohio Partners of Cancer Control (ODH) Member and  Project Leader 

 

Stefanie Speilman Breast Cancer Scientific Patient Advisory Committee - Member

American Association of Cancer Research - Member

Department of Defense: Congressionally Directed Medical Research Programs’ (CDMRP), Breast Cancer Research Program (BCRP) - Consumer Advocate

Ohio MBC Day of Action (Annual) - Training Coordinator and Event Partner

 

Health Union AdvancedBreastCancer.net Contributing Writer

Awards

Advocacy

Trainings

Previous

Positions

Komen Columbus 2019 Race for the Cure - Honorary Chair

More For MBC (Eli Lilly) MBC Patient Consultant and MBC Advocacy Ambassador 

Ohio MetsqueradeChair and Founder of the Ohio Metsquerade Gala

OSU Practitioner MBC Clinical Trial/PICORI Grant Proposal - Patient Consultant

TheUnderbelly.org Social Networking, Press, and Media Director; Contributing Writer

Cancer Support CommunityColumbus – Patient Advocate

Cancer Support CommunityGroup Founder and Leader for Young Adults Peer Support Group

Legislative

Introduction of Pre Exisiting Condition Protection Bill - Patient Advocate - October 23, 2019

Ohio MBC Day of Action; Ohio Statehouse – Training Coordinator and Event Partner  (October 23, 2019)

Ohio Senate Finance Committee - Patient Advocate / Spoke on behalf of Patients for funding the Ohio BCCP program -- I am first on the video link (May 28, 2019)

Successfully changed an Error in Ohio that eliminated Breast Cancer Patients from Medicaid Eligibility under the SRS Program (May 17, 2019) 

Komen Advocacy Summit - Patient Advocate / Keynote Speaker (May 1-3, 2019)

Ohio MBC Day of Action; Ohio Statehouse – Training Coordinator and Event Partner  (September 26, 2018)

 

Franklin County CommissionersPatient Advocate (First on the Video Link) (September 18, 2018)

Ohio Senate Finance Committee Cancer CaucusPatient Advocate (April 10, 2018)

Franklin County CommissionersPatient Advocate  (10:24 on the Video Link) (October 10, 2017)

Komen Ohio Legislative Advocacy Training (Training Leader)October 23, 2019

Scientist<->Survivor Program - American Association for Cancer Research: Completed April 2019

 

Komen Ohio Legislative Advocacy TrainingMarch 27, 2019

 

Hear My Voice – Living Beyond Breast Cancer: Completed October 2017

Media & Public Speaking

Articles

&

Blogs

** Original Post Listed, Syndication of articles not reported

 

Columbus DispatchKomen Columbus Race more inclusive to terminal cancer patients this year; Web and Print (May 17, 2019)

Columbus Dispatch - The Pink Paper; Print Only; (May 2019)

The JamesCancer Patient Calls for Less ‘Battle Language’ and More Focus on Palliative Care; Web Only; (May 9, 2019)

Columbus CEO MagazineKomen Columbus Race chair for 2019 has terminal breast cancer, but isn’t giving up – and neither is her doctor; Web and Print; May Issue (May 1, 2019)

The Washington PostA rising trend in cancer care targets physical, existential threats patients confront; Web & Print (May 6, 2019)

Health.com6 Ways to Thrive After an MBC Diagnosis (April 22, 2019)

Health.com - Doctors Kept Dismissing My Back Pain—Until I Was Finally Diagnosed With Terminal Cancer (April 8, 2019)

AdvancedBreastCancer.netThe Loan That Keeps On Taking (March 1, 2019)

 

AdvancedBreastCancer.netLiving Like An Outlier (February 1, 2019) 

 

All Recipes Magazine Editorial “Cook to Watch” Oct/ Nov Issue; Print (October 9, 2018)

 

The Bellefontaine ExaminerPounding The Pavement (October 18, 2017)

 

TheUnderbelly.org- Featured (December 12, 2016)

 

TheUnderbelly.orgOctober Instagram Takeover – October 10, 2017

 

TheUnderbelly.orgMBC Spotlight (November 14, 2016)

 

TheUnderbelly.orgHungry Bellies Recipe Series

 

TheUnderbelly.orgMultiple Blogs and Reviews

TV, Video

&

Radio

ABC6 (Columbus News) - May 20, 2019 - Living with cancer at young age, Komen chair hopes to inspire other patients

NBC4 (Columbus News) - May 18, 2019 Warrior Express helps breast cancer patients, survivors complete Race for the Cure 

NBC4 (Columbus News) - May 17, 2019 - Honorary chair for Koman Race for the Cure talks about her battle with metastatic breast cancer

Ohio Statehouse Newsroom (NBC) - May 17, 2019 - Technical error causes scare for breast cancer patient, OH Dept. of Medicaid apologizes

Boxer Show (WCOL Radio) - May 17, 2019 - Radio Interview About Metastatic Breast Cancer and Race for the Cure

Daytime Columbus (ABC) - May 10, 2019 - Komen Columbus Race for the Cure: Meet this Year's Honorary Chair

Good Day Columbus (NBC4) – March 1, 2019 – “Komen Columbus season kicks off with Ribbons and Rosé “

 

WPKO (Peak of Ohio News) – January 23, 2019 - Local woman named honorary chair for Columbus Race for the Cure

NBC 4 (Columbus News) – January 9, 2019 - Registration open for 2019 race for the cure

Eli Lilly More For MBC Digital Campaign Filming – October 13, 2018 – AKT Studios (NYC)

GMA Day – October 11, 2018 - How to do the 'Thriver' yoga routine for metastatic breast cancer awareness

Good Morning America – October 11, 2018 - Lilly is raising awareness about metastatic breast cancer

Good Day Columbus – October 5, 2018 - October is Breast Cancer Awareness Month

NBC 4 (Columbus News) – September 26, 2018 - Advocates push lawmakers to help make life better for cancer survivors 

Living Beyond Breast Cancer – June 20, 2018 - Twitter Chat: Single and Ready to Mingle: Dating and Breast Cancer 

 

Franklin County Commissioners Meeting – October 10, 2017 - Public Speaking (Time on Video: 10:29)

 

Hope Hollow – Columbus, Ohio – Patient and Programing Advocacy Video (2017)

 

Our American Stories – June 29, 2017 - One Amazing 30-Year-Old vs. Metastatic Breast Cancer And Bureaucracies

Peak of Ohio – December 7, 2016 - Local woman fights terminal illness while raising awareness

Public

Speaking

Living Well With Advanced Breast Cancer Conference - October 12, 2019 - Keynote Speaker

Great Lakes Breast Cancer Research Symposium - May 4, 2019 - Round Table Speaker

Komen Advocacy Summit - May 3, 2019 - Keynote Speaker

MetUp – April 6, 2019 - Die In - Keynote Speaker

Komen NE Ohio: Metastatic Breast Cancer Conference – March 9, 2019 – Patient Panel Speaker

 

Komen Columbus: Ribbons and Rose – March 1, 2019 – Keynote Speaker

 

Ohio Senate and House of Representatives: Cancer Caucus – September 26, 2018 - Ohio MBC Day of Action – Presenting Speaker

 

Ohio Metsquerade – September 22, 2018 – Event Chair and Coordinator

 

Living Well with Advanced Breast Cancer (OSU James Care) - September 15, 2018 – Advocacy Break Out Session - Guest Speaker

 

Hope Hollow – June 24, 2018 - “A Garden Party” – Guest Speaker

Upcoming 

Events

OCTOBER 14, 2019 - CBS 10TV

OCTOBER 14, 2019 - #MBCBCChat - Twitter @SusanGKomen

OCTOBER 23, 2019 - Ohio MBC Day Of Action

​NOVEMBER 8, 2019 - Eastern TN MBC Conference 

DECEMBER 2019 - San Antonio Breast Cancer Symposium 

TBA - Living with MBC Video Release - Dr Joe Explains

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News

Women under 40 can and do get breast cancer. Two of my favorite resources for women under 40 are Young Survival Coalition and Living Beyond Breast Cancer. Find both links in My Favorite Resources

More About Metastatic Breast Cancer

Did you know, breast cancer in the breast doesn't kill you? It's not until it metastasizes that it becomes terminal.  

Breast Cancer Under 40

tori@metastaticmillennial.org​

info@mysite.com

October is Breast Cancer Awareness Month. Help move from awareness to action by helping elevate Metastatic and AYA Breast Cancer voices.

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