National HBOC Week 9/25-10/2/2011

http://www.eventbrite.com/event/2108916827/?ref=enivtefor&utm_source=eb_email&utm_media=email&utm_compaign=invitefor&utm_term=readmore&invite=MTIxMTcwMy9iZXRobmxhcnJ5cGZlaWZmZXJzckBnbWFpbC5jb20vMA==

Click on the above link to learn more about what this event means!

In 2010, history was made with FORCE’s successful effort to pass a Congressional resolution declaring the first-ever National Hereditary Breast and Ovarian Cancer (HBOC) Week and National Previvor Day.

The goal of HBOC Week and Previvor Day is to raise awareness about hereditary cancer. HBOC Week marks the transition between National Ovarian Cancer Awareness Month and National Breast Cancer Awareness Month and recognizes anyone affected by hereditary breast or ovarian cancer, including women and men with BRCA mutations, people with a family history of cancer, breast and ovarian cancer survivors, and previvors, individuals who carry a strong predisposition to cancer but have not developed the disease.

An estimated three-quarters of a million Americans carry an inherited BRCA mutation but nearly 90% of these individuals don’t know about their risk. National HBOC Week and Previvor Day aim to help change that. And, it all starts with a celebration; please join us!

HUP Breast and Ovarian Cancer Awareness Conference

HUP Breast and Ovarian Cancer Awareness Conference

I am reaching out to a few friends and colleagues on a fundraising effort to help FORCE, a national nonprofit focused on hereditary breast and ovarian cancer (support, outreach, testing, research, legislation, etc.) that has become extremely important to my family. FORCE has over 70 outreach groups nationwide, including a very active organization here in Philadelphia. See www.facingourrisk.org/philadelphia for more info.

Most of you are involved with many charitable causes individually or as a company, but we wanted to inform you about FORCE’s mission to help reduce the risk of cancer and save lives. A woman who carries a BRCA mutation has up to an 87% risk of breast cancer and a 50% risk or ovarian cancer – versus 12% and 2% respectively for the general population without the mutation. For men, increased risk of melanoma, prostate and pancreatic cancer have also been associated with these mutations. I carry the BRCA2 gene mutation and FORCE was there for me with information and unconditional support.

FORCE is sponsoring 3 Breast and Ovarian Cancer conferences with Abramson’s Cancer Center (HUP) on Friday, October 28, 2011 to help bring awareness to our community. The attachment outlines the event and the benefits of the sponsorship. I am hoping you will consider sponsoring or providing a donation of any size to help. Through awareness and education, the people who carry the BRCA gene mutation can take steps to prevent cancer from continuing to impact future generations. Today, an estimated 90% of those people do not know they carry this gene mutation. We want families to pass down recipes, photos and memories to the next generation, not the risk of cancer. Please help FORCE and my family achieve this goal.

Thanks so much for your consideration.

Beth Cohen Pfeiffer, Social Media Coordinator

The following letters explain about sponsorship. If you cannot print them out from here, please send me an email and I will forward them to you!

Dear Prospective Donor,

Did you know that approximately one million Americans carry a cancer-causing gene mutation that puts them at high risk for hereditary breast and ovarian cancer (HBOC)

FORCE, Facing Our Risk of Cancer Empowered, is the only national nonprofit organization dedicated to fighting HBOC (Hereditary Breast and Ovarian Cancer) by providing lifesaving information, resources, and support through its programs.

To help raise awareness about HBOC, FORCE is planning a very special event during Abramson Cancer Center’s (Hospital of the University of PA) Breast, Ovarian & High Risk Cancer Conferences on October 28, 2011 at the Hilton Hotel on City Avenue in Philadelphia. A heart-felt Passing of the Torch ceremony will be held at the conclusion of these conferences with all attendees present where a flame will be passed from an ovarian cancer survivor to a breast cancer survivor. This marks the transition from Ovarian Cancer Awareness Month (September) to Breast Cancer Awareness Month (October). It also highlights the hereditary link between breast and ovarian cancer, honors cancer survivors and those at high-risk (previvors), remembers those whose lives have been lost to cancer, and recognizes families that have been affected by cancer. The conference includes topics related to Breast Cancer, Ovarian Cancer, and Women with High Risk.

How can YOU help? Become a SPONSOR for the event or simply make a donation!

Please select a sponsorship level on the enclosed sheet or make a donation in any amount and join us in our mission to raise awareness of HBOC. Together we can make a difference in the quality of life of many individuals and families during their HBOC journey.

If you have any questions or comments, please contact Kat Kline at 267-252-9949 or katk@facingourrisk.org. We would be very excited to have you as a partner in our mission.

Sincerely,

Amy Dysart, Mary Kraft, Diane Rose, Kat Kline, Annette Ramke, Stacey Jacobson,

Beth Cohen, Social Media Coordinator

Philadelphia Outreach Coordinators

Sponsorships are tax deductible as recognized by the 501(C)(3) IRS regulations. Checks should be made payable to: FORCE. Send checks to: FORCE c/o Kat Kline 201 Green Street, unit 4B, Philadelphia, PA 19123.

Sponsorships

There are several ways you or your sponsorship can help the HBOC cause and contribute to making the Passing of the Torch Ceremony a big success!

Sponsorship Levels:

$50.00

• Recognition of your company or individual name in the conference flyer handed out to all attendees.

$100.00

Recognition of your company and contact information or individual name in the conference flyer handed out to all attendees.

Recognition of company or individual name on FORCE’s local Facebook Page and in our monthly newsletter.

$500.00

Recognition of your company and contact information or individual name in the conference flyer handed out to all attendees.

Recognition of company or individual name on:

1. FORCE’s website through the end of the year.
2. FORCE Philadelphia’s Facebook page
3. Monthly newsletter
4. Will pass out business cards/flyers or brochures at our support meetings throughout the end of the year.

Donations of any amount would be greatly appreciated.

. Checks should be made payable to: FORCE. Send checks to: FORCE c/o Kat Kline 201 Green Street, unit 4B, Philadelphia, PA 19123.

Passing of the Torch

University of Pennsylvania

Sponsorship Contract

Please Print

Sponsor Name:______________________________________________________________

Contact Name:_______________________________________________________________

Title:________________________________________________________________________

Address:____________________________________________________________________

City, State, Zip_______________________________________________________________

Email address:_______________________________________________________________

Phone:_______________________________ FAX: ________________________________

Authorized Signature:_________________________________

Date:________________________

Sponsorship Amount: ___________________ Donation Amount: _______________

Sponsors needed by September 19, 2011

Brief description of company or services:

Questions and Comments

FORCE: Facing Our Risk of Cancer Empowered, is very excited to have you as a partner. Your sponsorship will help FORCE in its mission to fight hereditary breast and ovarian cancer. Sponsorships are tax deductible as recognized by the 501(C)(3) IRS regulations.

Checks should be made payable to: FORCE. Send checks to: FORCE c/o Kat Kline 201 Green Street, unit 4B, Philadelphia, PA 19123.

Spirit of Empowerment: A family gives back « Thoughts from FORCE

Spirit of Empowerment: A family gives back

Every Charity needs funds to run. Not every person who is affected by what the group supports can afford to give back monetarily. Some of these people take what they need and are never heard from again and that is fine. The main thrust of a charity is to help those in need. In order to help more people, more money is needed. It is a fiscal fact. Some, like me, give back by actions and deeds; I volunteer my time and energy whenever I can.

Then there are a wonderful family who has given back by establishing a Scholarship Fund and Project to aid those in need. The Brenda L. Caplan Memorial Fund was started by her daughter Dara Marius and husband, Myron Caplan. The Butterfly Project was created by Molly Marius with help from her mother Dara for Molly's Bat Mitzvah project in conjunction with the Scholarship to continue to add to it and extend its influence. Through these two funds, FORCE was able to bring 75 people to this year's Annual Joining FORCE's Conference. Below are excerpts from Dara's acceptance speech:

In accepting this award today, I would like to take a few moments to share with everyone here how FORCE has impacted our lives, and what this project has meant to our family.

Like so many in this room, our family’s lives have been irretrievably affected by hereditary cancer. I am BRCA 1 positive. My mother, Brenda, had both breast and ovarian cancer. Her half-sister died in her 30’s of breast cancer. My grandmother had bilateral breast cancer. Even my non-biological aunt, is BRCA 2 positive. In short, hereditary cancer– or the risk of it–is everywhere we look in our family.

The good news, however, is that with each generation the options become exponentially better. When my mother was diagnosed with breast cancer in 1992, no one suggested genetic testing to her despite her young age and strong family history. Had my mom been tested, and had her ovaries been removed, maybe her outcome could have been different.

But it is not just the prevalence of genetic testing that makes me optimistic. We now have treatments specifically tailored to the genetic make-up of a tumor. We have researchers who develop studies that seek to understand our unique population from both a treatment and prevention perspective.

Along with these important advances, in my mind, the broadest and most influential generational change for our community relates to the creation of FORCE and the passion of its members. Through FORCE, women and men affected by hereditary cancer find support, friendship, inspiration and most of all, knowledge. FORCE gives us unparalleled opportunities to acquire information and to find compassion and identity. FORCE is at the forefront of political leadership on issues and laws which affect the legal rights of our community.

Looking around this room, I know that we all have very individual and personal reasons for attending this conference. Some of us are previvors. We know or suspect we have a genetic mutation, and we come to this conference to understand our prevention and surveillance options. Others here are fighting hereditary cancer with bravery and dignity, and they seek knowledge of cutting edge treatment options available to eradicate their disease. Some are here professionally as doctors, researchers, geneticists, nutritionists, and counselors who help us treat, and prevent hereditary breast and ovarian cancer. And, finally, I can see the family members and friends—those who have the very difficult job of standing on the sidelines, watching and caring.

We all come together for different reasons. Yet, I believe we share one fundamental unifying belief. None of us here views ourselves as victims. Whether we have cancer, or a genetic predisposition, whether we care for or treat someone with hereditary cancer issues, we are all of us empowered. We cannot control our genes, but we can control how we respond to the hand life has dealt us. Instead of victims of chance genetic circumstance, we are people committed to helping each other and the generations yet to come.

For my family, this commitment and our desire to give back to the organization that personally helped me so much, led to the creation ofThe Butterfly Project. What started out as Molly’s idea to help people affected by hereditary cancer, rapidly grew into a namesake memorial fund for my mom and an ongoing scholarship program to provide monetary support to FORCE members who could not otherwise afford to attend this Conference.

Finally, for those of you who are somewhat new to FORCE, I’m going to let you in on a little secret. When you joined FORCE, you also took your place in a chain of people.

"For those of you who are somewhat new to FORCE, I'm going to let you in on a little secret."

Right now you may have one hand extended forward holding on to the hands of those who have walked this road before you. I am here to tell you that those people will hold your hand tight. They will keep you steady, and they will help you navigate the winding road over the mountains that seem so large. And, one day before you know it, you will cross those mountains and reach a beautiful valley. And when you arrive, your other arm will automatically reach back and grab on to those behind you, who you will now help. Because that is how it is done in FORCE. That is how we face our risk of cancer—we face it empowered as a community. On behalf of everyone who empowered the Butterfly Project, we thank you very much for this award and support!

The critical need for ovarian cancer prevention research « Thoughts from FORCE

The critical need for ovarian cancer prevention research « Thoughts from FORCE

The link above will take you to the latest blog entry from Sue Friedman, Executive Director of FORCE, Facing Our Risk of Cancer Empowered.

Women who carry the BRCA 1 or BRCA2 genetic mutation run an increased risk of ovarian cancer over and above the average woman in her lifespan. Because of the opportunity to poll the members of FORCE and the BRCA community as well as women with a previous diagnosis and those with Lynch syndrome, we tried to develop a prioritization of the prevention of this silent killer.

Please read the article and share it with others. Ovarian cancer is sneaky. It is hard to test for it until it may be too late. The research and studies are ongoing to help identify how we can better save the lives of many women across the world.

Love and hugs,

Beth

Bucket List? Why Not! The First 10.

I got to thinking that life is too damn short and I wanted to create and examine a bucket list. My parents had one too and it had one item: See Australia. My dad died in 1989 but my mom got to their dream destination in 1995 and went with her sister. They spent 3 weeks there and had a great time in both Australia and New Zealand. Ten rolls of film have proven that point.

So, I am having trouble itemizing my list. Should it be done alphabetically? With importance being the deciding factor? Based on the probability of completing the line item?  Nope, I am doing it as they pop into my head!

1.  See Washington, DC again with Larry. Whether or not the kids or grandkids come along is not relevant. I want to see it with him, together. It will be different experiencing it through his eyes and mine.

2.  Visit Cooperstown and the Baseball Hall of Fame. When I saw it the first time, it was just the Hall of Fame. But there is so much more! The Farmers' Museum, Fenimore Art Museum, Glimmerglass Opera and the New York State Historical Society. I have done some research and it appears that we could spend more than a weekend and really enjoy the splendor of that section of New York State. By the way, on a historical note, the town is named for Judge William Cooper, father of James Fennimore Cooper, who originally purchased the land.

3.  Seattle, WA and the outlying area. Okay, I will admit, three authors I really love have written about the area: Stephanie Meyer, Twilight Collection, Nora Roberts, The Search and Debbie Macomber's Cedar Cove Series. Although Cedar Cove is not a real town, Port Orchard about whom it is based is there! Maybe in honor of Bella, which was my paternal grandmother's name and my namesake, I will visit the real Forks. I also have friends who live in that area as well as in Oregon.

4. Mt. Rushmore National Park!  Never been to South Dakota either so this can be pretty tremendous. There had to be a very good reason for artist, Gutzon Borglum, to have picked these mountains. Yes, another piece of trivia that rattled around in my head and a push to see his creation!  Other National Parks are further down on the list! While there, it will lead to.....

5. We need to see the sculpture of Crazy Horse in the Black Hills. This past June celebrated the 135th anniversary of the battle of Big Horn. A bit of combined trivia: Korczak Ziolkowski, he too an award sculpture, came to help Borglum with Mt. Rushmore. He was asked by the Chief at the time, Standing Bear, to design and sculpt a project memorializing the Indians of North America.  My art history teachers would be proud of what I have retained after all these years.

6.  NEW YORK CITY! I want a week to see so many things but maybe one day would suffice. I want to see NYC again as an adult. Wander around the MMA, Broadway with maybe a show and dinner at a NY Jewish Deli. I have never been to the Guggenheim so that should be in there too.

7.  Mystic Seaport, CT is a tourist trap after the movie came out but I need to see it.  On a trip to Newport, RI with my ex-husband, I wanted to stop on the way to or from and he wouldn't. So, I am going to see my denied pleasure and have some great seafood!

8.  While on the East Coast, I have never been to Boston.  Baseball season would be terrific...they didn't replace Fenway Park did they? Even if they did, I want to see the BoSox play. Boston Commons, the Swan Boats, tour of Harvard and JFK's library, the New England Aquarium, maybe the Boston Children's Museum if we have time. See! I have thought these things out!

9.  Newport, RI is very near to a very good friend who lives in Warwick. Then again, RI being so small, nobody lives too far away from one another! Larry has never seen the Mansions of Newport and I want to visit them again as well as Green Animals sculptural gardens. One of the best places I would bet to get a lobster roll and I aim to have one!

10.  Freeport, ME.  Take a guess, the first three don't count unless you have never heard of, you GOT it, L. L. Bean!  It is open 24 hours a day. Wow, shopping at the outlet whenever we want. However, as I have looked into that, nothing else keeps hours with L.L. Bean so better off going back to the motel and sleep until breakfast. Maine is as far north as we can get on the East Coast and I want to see the sun come up there with a great cup of coffee keeping my hands warm as my heart fills with nature.

So that is the first installment!  There are friends in all of these places that I can also visit while knocking things off of my list. I need to sit back and think of more but my mind is whirling on a weird axis as it is with of all these places.  Looking forward to sharing more with you!

Love and hugs,
Beth

FORCE June Updates & My 4th Foobversary

Changes at FORCE, Ovarian Cancer Early Detection Study and More

I cannot believe how time marches on! Just five short years ago, I was debating on having a Prophylactic Bilateral Mastectomy (PBM). During that time, I talked to my doctors, family and friends for their input. Two of my close friends are survivors and they both said if they had the option like I do that they would take it. Neither one wanted to see me go through what they did with chemotherapy and radiation and all the side effects. But I still felt like I was intruding on their experiences and needed to talk to someone who had tested positive for the BRCA gene mutation. I turned to the Internet and found many sites devoted to cancer survivors.

In 2006, while doing my research on the Internet, I discovered FORCE, Facing Our Risk of Cancer Empowered. This site was existed primarily for people with either a hereditary genetic mutation and/or a strong family history of breast or ovarian cancers. I was excited to be able to feel like I belonged!

BRCA2 positive tested, check.

Strong family history of BOTH breast and ovarian cancers, check.

Needed help, support and information without feeling like I was intruding on survivors feelings, check.

I found my place, I found a home where I could ask questions and get help dealing with not being a survivor but yet still having a very high risk of being diagnosed with cancer. I had already had my ovaries out in 2002 thereby reducing my ovarian cancer risk to less than 2% and cutting the breast cancer risk from 90% to about 50%. Because my father had breast cancer, it raised my risk. In 2006, while on my journey of discovery about my future PBM, I was still finding health professionals still only concerned about my maternal side breast cancer history and as recently as 2010, some still thinking the BRCA gene is related to the sex chromosome.

Due to the efforts of the volunteer members of FORCE, these myths were being dismissed. The GINA, Genetic Information Nondiscrimination Act, was passed. Prior to GINA, I had to make sure my doctors did not write anything in my charts about being BRCA2+ less I be dropped from my health insurance. Now, patients do not have to worry!

The term, Previvor, became the #3 new word according to Time magazine in 2007! By definition, a Previvor: A survivor of a predisposition to cancer. No longer not being here nor there, I have a place in a community called FORCE, Facing Our Risk of Cancer Empowered.

After my PBM in June of 2007, I needed to look for more help since I was going through terrible infections. The members of FORCE came through once again. One member in particular was Barbara Pfeiffer who is currently the CEO of FORCE. She was always encouraging me and told me to post on the message boards to other members so they knew not all surgeries were a cake walk. I am so very thrilled and proud that Barbara is still a strong presence with FORCE and take this opportunity to send out congratulations and Mazel Tov. Don't forget, I will always be here to volunteer as always!

So, in looking forward, I am still cancer-free and celebrating the 4th anniversary of my PBM, or my own term, Foobversary, on June 7th!

Love and hugs,

Beth

Survey on ovarian cancer risk management research for women with ovaries

Survey on ovarian cancer risk management research for women with ovaries

FORCE, Facing Our Risk of Cancer Empowered (www.facingourrisk.org), is always on board with Advocacy programs. This survey was created so that we can attest for the need for continued funds for Ovarian Cancer research, risk management and treatment.  Below are the parameters for the survey.  All you need to do is click on the link above to get started!  And of course, please pass this along!!

Survey on Ovarian Cancer Prevention Research

Researchers are considering studies using medication or salpingectomy (removal of the fallopian tubes) to lower ovarian cancer risk in high-risk women. FORCE is partnering with researchers to understand more about women's attitudes about participating in ovarian cancer prevention studies.

This survey is open to women who:

• have a BRCA mutation, Lynch Syndrome, or ovarian cancer runs in their family
• have not been diagnosed with ovarian cancer and still have one or both ovaries

The surveys need to be completed by June 1st so that our Executive Director, Sue Friedman, can also present these results at our Annual JoiningFORCE's Conference June 23 to the 25th.

Love and hugs,

Beth