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Celebrating 41 years

On March 27, in just one week, I will celebrate my 41st birthday. Birthdays are meaningful to me–especially this one. I was 36 when I was diagnosed with Stage 2 breast cancer. This year I turn 41 and celebrate 5 years of survivorship. I feel so lucky to celebrate another birthday. Sadly, there are far too many women that don’t make it to 41. Yes, breast cancer is still stealing young lives, and I am committed to do what I can to stop that in its tracks. For my 41st birthday or just because, please join me in my fight to put an end to breast cancer.

This year, I have two ways for you to help. Facing Our Risk of Cancer Empowered has just launched a hereditary cancer research fund–the goal of the fund is to specifically look at the issues surrounding hereditary cancer. I’ve said goodbye to many amazing women who have faced cancer because of a genetic mutation. The research is absolutely critical, and I’m asking for your help. The goal in year 1 is to raise $100,000 to begin funding this important research. With your help, FORCE can get there.

In August, as I officially celebrate 5 years as a survivor, I will also proudly walk with over 40 men and women on Ta Ta Breast Cancer in the Susan G. Komen 3-Day for the Cure. I am proud to say, we are under $70,000 away from raising $500,000 since I first formed the team in 2008.

Please help me celebrate 41 years. Many small donations will add up to so much for both of these organizations. Together, we can say goodbye to breast cancer forever.

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Vote for FORCE in the Chase Community Giving Challenge

If you regularly read my blog, you know that I am very passionate about a lot of organizations, but there are two in particular that are nearest and dearest to my heart.  One is Susan G. Komen–the organization dedicated to finding a cure for breast cancer. 

The other organization is quite a bit smaller and in the shadow of the biggies but no less important.  It’s called FORCE and their mission is to improve the lives of people affected by hereditary breast and ovarian cancer.  It was started by a wonderful woman who cares deeply about this cause and who works tirelessly to make a difference in our community.  FORCE has helped me, but more importantly I’ve seen the masses of women who have come to challenging crossroads in their lives and have persevered with the support of FORCE.  I’ve sat in local meetings and watched women tearfully talk about how alone they felt before they discovered the support of FORCE. 

FORCE has some important roles in our community.  First and foremost, FORCE has the ability, through local outreach coordinators all over the country, to provide support on an individual and group level to women who are navigating the complex world of hereditary cancer.  In addition to the local support groups, the message boards provide a safe-haven for women to come together.  And the toll-free 1-800 number is a place for people to turn when they don’t know where else to go.

Second, FORCE advocates for the hereditary cancer community–taking on issues such as GINA to make sure our rights are protected and we cannot be discrimated against for our genetic make-up.

And last, FORCE helps raise awareness of hereditary breast and ovarian cancer so that women can learn of a cancer causing genetic mutation, take preventative measures and avoid a cancer diagnosis. 

Have I convinced you enough how much I care about and love this organization?  If I have, please take a few seconds to vote for FORCE in the Chase Community Giving Challenge.  If you have another few seconds to spare, post it on your Facebook page, tweet it and share it with your friends. We have the opportunity to win a grand prize of $250,000, one of 4 runner up prizes of $100,000 or one of 195 $20,000 prizes.  With your help, we can make this a reality.

Vote for Friendship Circle

Yes I’m usually pretty focused on breast cancer. But there are many other causes that are important to me.  Today, in particular, I’m focused on The Friendship Circle–a remarkable organization that touches the lives of kids with special needs.  Why today? Because beginning in a few short hours, the Friendship Circle has an opportunity to win $1,000,000 in the Chase Community Giving event.  All it takes is your vote.  The effort they’ve put forth in promoting this opportunity is similar to the way they do everything and indicative of the talent and the time put into this organization.  Every year I participate in their annual walk and have an opportunity to visit the building.  I hear the passion in Bassie’s voice as she shares the accomplishments of the year.  I listen to my friends share stories of how this organization impacts their life.  And I am happy to support and share in the wonderful experience.  It just takes a minute to vote and a couple extra minutes to remind your friends to vote.  Let’s watch Friendship Circle continue to do great things.   

Raising Awareness of Hereditary Cancer

 I’ve spent a lot of time in the past month thinking about hereditary cancer issues.  Last Friday, I spoke to the Michigan Cancer Genetics Alliance about FORCE.  And in between, I’ve had two FORCE outreach meetings. In speaking to the MCGA, I communicated my concern with the lack of awareness of both hereditary cancer and the importance of Genetics Counselors in the process.  Through my interactions with many of them, I know that they have similar concerns.  They had some nice suggestions of various groups within Michigan that may help me take on this issue.  I talk to women everyday who don’t know they are at risk and don’t know what to do if they are at risk.  Clearly I fit in the “didn’t know I was at risk” category. We’ve come along way through organizations like FORCE and Be Bright Pink but we still have a long way to go. 

FORCE coined a term to give people with a hereditary cancer genetic mutation a name.

FORCE coined a term to give people with a hereditary cancer genetic mutation a name.

At my most recent FORCE meeting, I met a woman who’s sister was diagnosed with DCIS (stage 0 breast cancer).  Prior to this diagnosis, she had no idea that she was a risk for a BRCA mutation.  She tried to get genetic testing but her insurance company turned her down.  6 months later her sister was diagnosed with stage 3 breast cancer and 1 year later is back with more cancer.  Could this be avoided?  This is just one of many stories I hear.  How can we make sure that more women have the knowledge they need to ultimately avoid a cancer diagnosis?  Do we need a specific week devoted to hereditary cancer awareness?  I need your help, my readers, to make sure that we are able to inform, educate and spread the word.  We are a small but mighty group and we can do this together.  Post some comments and let me know how you think we can make an impact.

Please show your support of the EARLY Act for Breast Cancer

I’ve posted before about the importance of the EARLY Act.  FORCE is submitting a wonderful letter showing theirearlyactlogo support and I urge you to add your name to the letter.  Feel free to read the full letter or some of my other breast cancer posts on this topic to understand the importance of the EARLY Act.   If you would like your name added to the letter, just email info@facingourrisk.org and type EARLY in the subject line. 

Thank you again for all your support!

New friends

I’m heading back from Orlando now with lots of new friends.  Day two of the FORCE conference was great.  We started the day with a panel of researchers telling us about lots of studies going on in the area of hereditary breast and ovarian cancer and BRCA specific research.  It was so promising to see all of these brilliant people sitting in front of me telling me about research they are doing to benefit me and the entire hereditary cancer community.  And I know that the studies I learned about were only a fraction of the research going on in this area.

After this panel, I was completely energized and I had the opportunity to sit with a woman from Susan G. Komen and share my thoughts and hopes.  I can’t wait to continue my conversation with her and others from Susan G. Komen.  I was particularly happy to hear about the level of grants they are providing in the area of hereditary breast cancer—knowing that the $87,000 Ta Ta Breast Cancer raised in 08 is contributing to the tremendous research they are funding in the hereditary breast cancer—6.1 million dollars in 2008 alone.

I spent more time in the exhibit hall—bought a fair share of pink from my new friend Courtney from Pink Wings.  And got to meet Lindsay Avner—the founder of Bright Pink—an organization I’ve admired for awhile.

A group of 8 of us had dinner in Downtown Disney.  IMG_1318The number of fingers we’re holding up show whether we are BRCA 1 or 2.  In the group, we had 3 survivors and 5 previvors (women that carry the gene but have never had cancer).  We shared our stories over a fun Cuban dinner with a pitcher of Sangria and some Mojitos  added to the mix.  And most importantly we laughed a lot.

The day was packed with information, networking, meeting and connecting with new people.  I even squeezed in a long walk around Orlando and Disney with my new friend Debbie and ended the evening with a “Pure Romance” girls night in.  What a great day!

HoneyBaked to our rescue!

Last Night, we had another great FORCE meeting and HoneyBaked provided food for us.  After the meeting, I sent a thank you to our HoneyBaked contacts and realized that the letter was worth sharing on a broader scale. 

Dear Wendy and Geoff,

Thank you so much for providing the delicious HoneyBaked food last night.  The meeting was fantastic and each time I have one of these meetings, I realize the true power of FORCE and the importance of the ongoing success of this organization.  Here’s a few highlights. 

One woman attended the meeting with tears in her eyes.  As a young child, she watched her mother die of breast cancer.  She lost her father to Crones Disease and a brother to a heart attack.  She is 33 years old, unmarried with not one single family member.  Completely alone in this world except for some friends.  A week ago, she found out she has the BRCA mutation giving her an up to 85% lifetime risk of breast cancer.  She is prepared to have a bilateral mastectomy but her friends think she is absolutely crazy.  The first place she found was the FORCE message board and after posting her story, she got returned messages from perfect strangers who told her they were there for her and completely supported her.  The same thing happened in the meeting last night and she walked out feeling stronger, happier and more positive about her decision.

There was another young woman there with her sister, mother and father.  She started her battle with cancer in July and is in the reconstruction phase of her breasts.  She is very uncomfortable right now and worried about the final result.  After the meeting, we went in the bathroom and I was able to show her what her breasts will look like when she is done.  She gave me a huge hug, thanked me, and walked away so much happier.  Her sister (BRCA also) has not had cancer but spent the entire meeting with tears in her eyes.

A third woman also lost her mother and most of her family members to breast and ovarian cancer.  She has two young children and intends to see them grow up.  She is currently battling with her insurance company to cover preventative screenings.  The genetics counselors in the room stepped up to tell her that they will write letters of medical necessity to get her screenings covered.  She had no idea that they would take care of this for her.  We also were able to share that prophylactic surgeries are covered by insurance–most people had no idea. 

 These are just three of the stories.  There were more and this is just one meeting in one area.  I read the message boards and know the stories go on and on.  Without funding, FORCE cannot continue. 

 In addition, I know that FORCE is 100% looking out for me and my risk factors.  They are the ones making sure that research continues in the hereditary cancer and this is so incredibly important to people like me with the BRCA gene.  I intend to live the rest of my life free of all cancers.  And I credit FORCE for making my life better in this way.

I thank you from the very bottom of my heart for what you are doing for my organization!  I am telling the world about HoneyBaked!!!  I am sending my friends and family your way, blogging about you and announcing you to my Facebook friends.  I’m asking them to do the same. 

I wish you much success always and hope this campaign is tremendously successful for all of us!

 

Sincerely,

  

Ellyn

Ham anyone?

I’m not much of a ham eater.  In fact, I think the only time I ever ate ham was in a sandwich marked turkey and I was convinced it was just very pink turkey.  It really doesn’t have anything to do with my religious beliefs—even though I am Jewish and I grew up in a house that didn’t eat ham or any other pork products.   Despite this, my new favorite company is HoneyBaked.  If you clicked on the link, you may have already discovered why.  If you haven’t, let me explain.  A short while ago, 51 HoneyBaked stores in 7 states including Michigan decided to support the fight against breast cancer—this alone puts any company at the top of my list.  But, HoneyBaked went one step further and supported my absolute favorite organization, FORCE.  Not only are they donating money to FORCE, they are promoting awareness of hereditary breast and ovarian cancer.  So here I come HoneyBaked and hopefully my readers will join me too.  Help support this company that is helping support me and so many others!  And if you don’t eat ham, they’ve got lots of other great food.  Make sure to check out their website where you can order online, print some coupons and view their catering menu.  Thanks again HoneyBaked!   

Is it almost May?

 

annie23

My all time favorite musical is “Annie”.  As a child, I saw it in the theater several times.  At 7 years old, we had a friend that was the understudy for Annie at the Fisher Theater.  Before and after the show, I’d go to the dressing room and meet the cast—a dream come true for a 7-year old girl.  As an adult (even prior to kids), I went with a couple of friends to see the show again and loved it just as much.  The week my daughter was born, my mother-in-law purchased the VHS tape of the 1999 movie.  I nursed my new baby and watched the movie.  My kids are still watching it every now and then.  And my two year old knows every word to the song “Tomorrow”.  So when I found out Annie was making its way to the Fisher Theater once again and an old high school friend of mine gave me the opportunity to make it a fundraiser, I hopped at the chance.  So now, I’m selling tickets to my favorite show, raising money for both FORCE and Ta Ta Breast Cancer and going with my 3 children, my parents and my in-laws on Mother’s Day.  I’ve been giddy with excitement since I sent out my first emails yesterday and started to see immediate results.  Can’t wait to see that cute little red head singing my favorite songs. 

Why Knowledge is Definitely Power

Last night we had another great FORCE meeting at Beaumont.  I always walk away from the meetings smiling.  I’ve formed some really nice friendships with some of the woman in the group. 

I really felt the power and importance more than ever last night.  At our first meeting, there were two sisters.  Their dad had just been diagnosed with breast cancer and both sisters were contemplating getting tested.  Last night, all three joined us for the meeting and shared their story. 

After the last meeting, they both got tested—one had the mutation and one did not.  The sister with the mutation went for her initial MRI screening and was immediately diagnosed with cancer.  She is currently undergoing chemo and was lucky to catch the cancer when she did.  She found her cancer because of her knowledge of the BRCA gene and her risk factors.  This is why we need to work to create awareness and make sure people understand how their family history can impact their lives. 

Our next meeting will focus on a very challenging but necessary topic—how to talk to your kids about the BRCA gene.  I’m looking forward to some professional insight and hearing ideas from the rest of the group.  I will share what I can in my blog post after the meeting but if you live in Southeast Michigan, we’d love to have you join us.  Come check out the power of this group for yourself.

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