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This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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Posts Tagged ‘facingourrisk’

May 14, 2017

The Lights of May

Special note: In honor of Mother’s Day 2017, and my son, Beau’s graduation which is next week, I’m recycling this post that I wrote in 2012. This post is as relevant as when I wrote it 5 years ago. I have yet to see a firefly in Tampa but tonight I will look extra hard. … + read more

February 15, 2017

Guest Blog: Join FORCEs at our 2017 HBOC Conference!

by guest blogger, Jane E. Herman When I boarded the flight for my first trip to Orlando in June 2011, my goal was not to hug Mickey Mouse or visit Cinderella’s Castle. Rather, my destination was the sixth annual Joining FORCEs Conference. Not knowing anyone who would be in attendance, I was – not unexpectedly … + read more

September 28, 2015

Thanks Dave Bushman, for Sharing Your Story and Supporting FORCE’s Work

  Why I fundraise: When FORCE announced its FOR OUR CHILDREN fundraising effort, I immediately signed up. Although I was extremely reluctant to ask friends and relatives to donate, I knew that many of them would respond because they know how much FORCE means to me. My wife Jessie is fundraising, too – it’s a … + read more

September 5, 2015

Proposed Regulatory Changes Will Undermine Patient Protections Under GINA

Employees will be faced with a difficult choice—either disclose personal health information or maintain their privacy and pay more for health coverage. by Lisa Schlager Personal privacy and workplace protections are in jeopardy with recent proposals by the Equal Employment Opportunity Commission (EEOC). In April, the Commission proposed revising and reinterpreting the Americans with Disabilities Act (ADA) … + read more

August 24, 2015

XRAYS Program Looks Behind the Headlines to Make Sense of Cancer Research

FORCE is proud to launch our new program, eXamining the Relevance of Articles for Young Survivors (XRAYS). Funded by the Centers for Disease Control (CDC), the XRAYS program was developed to meet a growing need as more and more medical research articles on breast cancer are making the headlines. With the rise of social media, more consumers are turning … + read more

May 9, 2015

Newly proposed United States Preventive Services Task Force (USPSTF) breast cancer screening guidelines fail to address the needs of many women

The United States Preventive Services Task Force (USPSTF) has published its Draft Breast Cancer Screening Guidelines. Once finalized, these recommendations will replace current guidelines that were published in 2009. The proposed recommendations are specifically to guide decision-making about breast cancer screening for women of average breast cancer risk. The guidelines are particularly important for patients … + read more

March 31, 2015

Angelina Jolie and Patient-Centered Outcomes Research

Kudos to Angelina Jolie Pitt for sharing her BRCA status and news of her prophylactic surgeries with the world, soon after her risk-reducing mastectomy two years ago and again last week when she wrote about her bilateral salpingo-oophorectomy. Her two op-eds brought an unprecedented level of awareness about hereditary cancer, making words like “mutation” and … + read more

February 3, 2015

Spreading HBOC Advocacy to Japan

Last month I had the honor of giving two talks at a conference organized by the Japanese HBOC Consortium in Tokyo: one for patients and the other for health care providers. Most people in Japan have little input into their health care decisions and do not question their doctors’ recommendations. The conference organizers hoped that … + read more

December 19, 2014

A Game-Changing Holiday Gift for People with BRCA Mutations

Today is a landmark for the HBOC community! After almost a decade of research, AstraZeneca has received FDA approval for Lynparza (also known as olaparib) for women with BRCA mutations who have ovarian, fallopian tube or primary peritoneal cancer, and who responded favorably to their initial treatment. This is the first FDA-approved PARP inhibitor, and … + read more

December 15, 2014

Education, Medical Decisions, and Regret

Note: This article was originally posted in 2014 and updated on 05/12/16. An AARP article that contained an interview with rock stars Sheryl Crow and Melissa Etheridge brought awareness to the individual and personal nature of genetic testing, hereditary breast and ovarian cancer (HBOC), and the medical challenges that accompany inherited breast cancer. The article also led to … + read more

March 3, 2014

Health Care Providers Can Help Accelerate Hereditary Cancer Research

Why HBOC research is important Hereditary cancers constitute a small subset of a larger disease state. About 7% of breast cancers and 18% of ovarian cancers are due to a BRCA mutation. The HBOC community shoulders a disproportionate cancer burden, facing lifetime cancer risks that are higher than any other known population. Our cancers tend … + read more

February 21, 2014

FORCE 15: Reasons to Join FORCEs and Attend Our 8th Annual Conference

Need a reason to attend this year’s Joining FORCEs Conference? Here are 15 good ones: It’s the largest annual gathering by and for the hereditary cancer community.  Be a part of this landmark event. We make the latest science understandable and accessible. Hear experts clearly explain the science of hereditary cancer and make the latest … + read more

February 1, 2014

Patient-Centered Outcomes Research Institute (PCORI): Research Done Differently

What is PCORI? The Patient-Centered Outcomes Research Institute (PCORI) is a new government-supported agency that approaches medical research with a focus on the patient to improve health outcomes. Aiming to answer medical questions that are most important to patients and collecting data from “real world settings,” this differs from traditional research, which typically occurs at … + read more

October 2, 2013

Meeting the Challenges to Hereditary Cancer Research

This week is National HBOC week and today is National Previvor Day; personally this season is marked by equal doses of reflection, recollection, gratitude, and action. Much progress has been made in cancer research in the 15 years since I learned about my mutation and founded FORCE. Perhaps most exciting are the advances in “personalized … + read more

August 22, 2013

Hereditary Cancer Impact Is More Than Skin Deep

Articles about Angelina Jolie’s revelation that she underwent genetic testing and prophylactic mastectomy with reconstruction often emphasize her as one of the world’s most beautiful women, who is still beautiful after all that she has endured. This message can be reassuring; by going public, Ms. Jolie put a more positive spin on the stigmatizing effect … + read more

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