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FORCE Blog

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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Advocacy

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 27, 2015

Beyond Awareness: Working to Improve Outcomes for People Facing Hereditary Cancer

This week we mark National Hereditary Breast and Ovarian Cancer (HBOC) Week, and on Wednesday, National Previvor Day. This awareness campaign acknowledges the over one million people and families in the United States affected by hereditary cancer, due to a BRCA, PALB2, PTEN, ATM or other mutation linked to these cancers or a strong family history … + 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

September 3, 2015

Guest Blog: We All Deserve the Chance to Make Decisions About Our Futures

By Teri Woodhull Like most families in the FORCE community, cancer followed my family for generations. Breast cancer touched my mother, her mother, her mother’s mother, and my mother’s first cousin. And me. We knew it had to be more than a coincidence. My mother died at 46 of breast cancer. Her oncologist and other … + read more

August 9, 2015

Guest Blog: Attending ASCO as a Research Advocate

By Robin Karlin Thirty thousand health professionals, fabulous views of Lake Michigan and downtown Chicago, miles of escalators, fountains and crowded atriums, long lines at every Starbucks, session after session of the latest research and educational panels, and a fun evening at Shedd Aquarium. These were all part of my 2015 American Society of Clinical Oncology … + read more

June 2, 2015

An Advocacy Win for Cancer Survivors Facing HBOC

  We frequently mobilize our community to challenge health policy barriers to medical care. It’s always gratifying when we are able to report wins, when FORCE organized and amplified your voices to affect positive change. Clarification of guidelines paves the way for eligible cancer survivors to receive BRCA counseling and testing at no cost Guidelines … + 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

April 13, 2015

Another Reason for People to Know Their BRCA Status

By sharing her BRCA status and news of her prophylactic surgeries with the world, Angelina Jolie Pitt has raised awareness about BRCA testing and hereditary cancer to new heights. Her op-eds have created the “the Angelina Effect,” a term describing how her celebrity has increased demand for these services. Still, many people who meet national … + 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

March 5, 2015

Regulating the Next Generation of Genetic Tests

Gene sequencing – also known as genetic testing – is the process scientists use to analyze DNA in search of mutations and variations in an effort to discover more about the connection between genes and traits, health and disease. Since the discovery of BRCA 1 in 1994, the sequencing of genes to find mutations has … + 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 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

June 29, 2014

FDA Approval of Promising Targeted Therapy Likely Stalled Until More Research Studies are Completed

Wednesday, June 25, 2014 was a pivotal day for our community. It began with promise and ended with disappointment. For the first time ever, a treatment targeted for BRCA-associated cancers was considered for approval by the FDA. Yesterday the FDA’s Oncologic Drug Advisory Committee (ODAC) held a hearing to consider FDA approval of the drug … + read more

March 24, 2014

Challenges to HBOC Research Enrollment: Competing Cancer Treatment Studies

Research is the key to better medical options. In prior blogs, I outlined some of the barriers to completing hereditary cancer research. This is the next blog in our series about addressing the barriers to hereditary cancer research. Hereditary cancers make up a small subset of a larger disease state. About 7% of all breast … + 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

Connect with others.

Call our Helpline

Our helpline offers peer support for people concerned about hereditary cancer. All calls are confidential. Call any time.

Join a Local Group

FORCE has outreach groups throughout the United States and in Essex, United Kingdom that meet periodically to offer peer support, and share resources.

FORCE:Facing Our Risk of Cancer Empowered