Tuesday, May 17, 2011

Come see us on May 24 at the Cancer Support Community

Just a reminder, if you live near Los Angeles your next opportunity to come see us is May 24th at the Cancer Support Community Benjamin Center.

Our topic:

High Risk Breast and Ovarian Cancer Update
 with Ora K. Gordon, MD and Joi Morris
We look forward to seeing you there!
Joi and Ora

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Monday, May 9, 2011

Pay it forward

"Pay it forward."

These are words I hear often from women involved with FORCE: Facing Our Risk of Cancer Empowered. Women find our organization at a time when they are in desperate need of support and information, often after being diagnosed with breast or ovarian cancer or after learning they or someone they love has a mutation on a BRCA gene.  Once they have survived surveillance, surgeries, and often chemo, the women of LA FORCE want to pay it forward and help other women travelling this fear fraught road.

Five years ago I was one of those women living in fear. My mother and I learned that we both have BRCA mutations and that her breast cancer was hereditary. We also learned that I needed to make drastic decisions in order to avoid also becoming a cancer statistic.

I turned to FORCE and the women I met were utterly amazing. They spent hours with me on the phone and in person, providing perspective, sharing their family stories, and most importantly, baring their breasts for me so that I could see up close and in person their breast reconstruction. Once I decided to have prophylactic mastectomies they supported me through the entire process, visiting me in the hospital and spending more hours supporting me during recovery. They even took me to the annual FORCE Conference in Florida, carrying my suitcase because I was only weeks post surgery and unable to lift anything heavier than my small purse. I became an Outreach Coordinator for FORCE because I wanted to pay it forward and help other women the way I had been helped.

I hear the same thing from women in our LA FORCE group regularly. We have become a network of women (and men) helping others down the scary path of negotiating hereditary breast and ovarian cancer (HBOC). The Los Angeles FORCE Outreach group was started 6 years ago by two sisters who found themselves facing life-changing decisions after learning that they carry mutations on the BRCA1 gene. FORCE is a national organization but these women wanted to reach out directly to other women in Los Angeles to create a one-on-one support group. Since that time LA FORCE has touched the lives of hundreds of women.

While this is the essence of FORCE it truly is so much more. FORCE:

Provides a caring and experienced support system that helps people deal with cancer risks, decision-making, privacy issues, insurance issues, psychosocial issues, and family dynamics
Empowers affected families to make informed decisions by making the latest “cutting edge” medical research accessible and understandable. With additional funding we could reach more people through community education events with health professionals in our community.
Links individuals and families with medical resources and clinical trials specifically for hereditary cancer.
Actively advocates for increased research and resources specific to hereditary breast and ovarian cancer; resources that are critical to finding effective prevention, detection, and treatments.
Provides outreach and educational materials to the medical community and other community organizations.

No other organization does what FORCE does. FORCE is the only national nonprofit organization dedicated to helping families with HBOC. And it fulfills its mission on a shoestring budget.  No other nonprofit does so much with so little.

How can you help FORCE?

Two ways: 

1. If you live in Southern California you can create a video tribute to FORCE and enter it in the ABC Channel 7 Pay it Forward competition.  Seven nonprofits will each earn $7,000 and will be featured on ABC7.  Deadline for entry is Thursday May 12, 2011.  FORCE is so chronically underfunded that we rely almost exclusively on volunteers to complete our mission.  $7,000 could help us launch two to three more outreach groups in Southern California.  In addition to our groups in Los Angeles, Orange County and San Diego we would like to bring FORCE outreach to the West San Fernando Valley, to the Burbank/Pasadena area and to Riverside.  We have volunteers to help run these groups.  What we don't currently have is the money to get them started, to start and maintain their web pages, to print and distribute literature to these groups and to doctors in their area, to purchase the small tabletop displays for these groups to go out into the community and do their work representing FORCE at breast cancer walks and other community events, and to set up and maintain Constant Contact accounts for these groups to communicate with their members.

2. Visit the FORCE website and donate directly.

With a group like FORCE every dollar counts.  Please do what you can to help out today.

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Sunday, May 8, 2011

Happy Mother's Day

"Mom? Where is the whisk?"

"Mom? Where is the pancake pan?"

"Mom? Where is the pancake recipe?"

"Mom? How can I tell if the pancake batter is too thick?"

"Mom? How do I turn it over?"

These are the sounds of my children making me breakfast on Mother's day. They want me out of the kitchen so they can accomplish their task unassisted but they have many questions. I of course will dutifully eat whatever they produce, regardless of whether it falls apart in the flipping or whether it ends up burned and I will likely do the kitchen cleanup at the end. But it is a lovely tradition our family has had since my sons were little. Even if I am awake hours before they arise I stay in my bedroom and allow them to bring me breakfast in bed.

Mother's Day is a day to celebrate our mothers and should be a day filled with joy and family celebrations. Unfortunately, when a BRCA mutation lurks in a family many of the mothers who should be celebrated have been taken from their families by breast or ovarian cancer. The loss of these mothers leaves a hole in these families and turns this day of joy into a day of sadness and remembrance. The FORCE Blog has stories and perspectives of mothers and daughters whose lives have been changed due to hereditary breast and ovarian cancer (HBOC). HBOC affects generations of women and families. If you are one of our regular subscribers it is no doubt touched your family.

I am lucky. Although my mother had breast cancer at age 43, she is a long-term survivor and still a central figure in our family. I don't know what I would do without her as she always hops on a plane and comes to rescue me in my time of need: the birth of my children, illnesses that have knocked me off my feet, recovery from surgery, and stepping in to fill my role on those rare occasions when I need to travel.

Thank you Mom, for everything!

What is your family's story?  Please share your stories and comments here or send us an email.  May should be filled with stories in tribute to our mothers.  Become a guest blogger and join us in paying tribute to all the mothers whose stories need to be told.

Happy Mother's Day!!!

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Monday, May 2, 2011

A lost generation

Well worth watching, and considering:

This video was created for the AARP U@50 video contest and placed second. It has had more than 15,000,000 views on YouTube since it was posted three years ago. You can view the video here.

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