YSC’s Research Think Tank Remembers Randi Rosenberg (1965-2010)

Diagnosed with breast cancer at the age of 32 in 1998, Randi Rosenberg was one of the original founding members of Young Survival Coalition (YSC) and its third board president. Her drive to enact change fueled her talented way of engaging the busiest people on the planet to get involved in solving the problem of early onset breast cancer.

Randi Rosenberg (1965-2010)

Randi Rosenberg (1965-2010)

Randi was incredibly smart, funny, inspiring and inquisitive. Although petite, her larger-than-life contagious, collaborative energy filled up a room and motivated others to accomplish common goals. She was a woman who could change the world … and she did.

It was Randi’s view that unlocking the answer to early onset breast cancer was the key to curing most women of breast cancer and that in order to force a national agenda, young survivors of all cancers needed to band together. Her work with the Steering Committee of LIVESTRONG’s Young Adult Alliance (now Critical Mass) in 2006 resulted in Closing The Gap: A Strategic Plan, one of the strongest and most powerful agendas in history to address young adult oncology issues.

She believed that the support young women received at YSC would sustain them in good times and bad.

Randi was diagnosed with bone metastasis in 2006. She died of her disease on February 15, 2010. She leaves behind her partner, Matt Purdue, their beautiful daughter, Alexandra Marais, brothers Lee and Scott, and her mother, Roberta (Bobbi) Rosenberg.

We will be forever grateful for the passion, dedication and joie de vivre that Randi gave to YSC. She taught us that significant change can happen when a few people unite to make a difference.

And so it is that we held a Research Think Tank last week in Randi Rosenberg’s honor – just one week shy of the three-year anniversary of her passing, as happenstance would have it. We gathered researchers, clinicians and advocates who care about increasing the quality and quantity of life for young women affected by breast cancer together in one room so we could collaborate at a level that Randi would have applauded. She truly believed that if we could unlock the key to why young women got breast cancer then we could perhaps better understand it in all women. The think tank proved that Randi lives on in so many of our hearts as we work together to try to improve young women’s lives.

We will honor Randi’s legacy and carry her spirit with us as we continue to ask the key questions that drive forward advances in research pertaining to early onset breast cancer.

 

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Categories: Guest Bloggers

Channeling Kat at YSC’s Research Think Tank

YSC Research Think TankI was very excited when I got the email last July from Kat Werner inviting me to be part of a YSC project called the Research Think Tank.  The email explained that in 2001 YSC had convened a “Medical Research Symposium on Young Women and Breast Cancer,” which resulted in a white paper that set an agenda for the future direction of research in young women.  Now YSC was re-evaluating the state of the research, in order to identify what “holes” still existed in breast cancer research pertaining to young women.  Kat invited me to be a part of the Think Tank, and I jumped at the chance.

You see, despite my degree in English and my almost total avoidance of science courses in college, I have become a medical science geek. I visit websites that report new medical developments.  I have attended the San Antonio Breast Cancer Symposium for the past two years, and I have reviewed grant proposals for the Department of Defense Breast Cancer Research Program.  So this self-described science geek was thrilled to be invited to be a part of the Research Think Tank that would be a collaboration between advocates and researchers to set a revised agenda for young women with breast cancer.

In preparation for the conference itself, Think Tank advocates were divided into work groups, and each work group was assigned a broad area on which to focus.  I was assigned to the Treatment work group.  This group focused its efforts on analyzing research concerning surgery, chemotherapy, radiation, and endocrine therapy specifically in young women and then identifying important issues which had not yet been studied.  What struck my group most as we were exploring the existing research is the total lack of a uniform definition of what constitutes a “young woman with breast cancer.”  Many studies appear to use menopausal status as a surrogate for age, often with no indication that anyone has confirmed the patient’s actual menopausal status.  More significantly, of the studies that have classified women by age, there are studies defining “young women” as those under age 35, those under age 40, those under age 45, and—somewhat astoundingly—those under age 65.  Without a common definition of who is a “young woman with breast cancer,” how will researchers ever be able to reach meaningful conclusions on the appropriate treatment for these women?

Which leads me back to why the upcoming YSC Research Think Tank is so important.  A study presented at last year’s San Antonio Breast Cancer Symposium appeared to show that breast cancer in women diagnosed at age 40 or younger responds differently to chemotherapy—almost as if it is a different disease.  Yet this disease is not being systematically studied in this group of women. This is a perfect example as to why we need to focus researchers to help make a measurable impact in the lives of young women affected by breast cancer.

While I have been looking forward to the Think Tank meeting since last July, my excitement has been somewhat dampened by the tears I’ve shed since Kat’s sudden death last September.  Kat had a remarkable talent for cutting through the scientific doublespeak and getting to the heart of the issue or the hole in the science.  She respected the researchers, but she also commanded their respect due to her depth of scientific knowledge and her ability to clearly articulate the survivors’ perspective.  She was never intimidated by the researchers she met because she believed we could only truly find a cure if advocates and scientists worked together.  While I know that others had a part in initiating this Think Tank, it truly reflects Kat’s heart and soul.  It hurts to know she won’t be physically present at the conference she planned to lead, but I hope that I, along with all the advocates and scientists, can channel her spirit as we work to outline the necessary research strategy it will take to improve the lives of young women affected by breast cancer.

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Categories: Guest Bloggers

Thoughts on World Cancer Day

WCDToday is World Cancer Day (http://www.worldcancerday.org/), which I have to be honest, I don’t know if I really get. While I love the idea of dispelling the myths around the disease, I don’t know if we need a special day to do that. Maybe if on this day everyone that has been diagnosed with cancer was given the day off from work – now that would be interesting and worth celebrating.

Many different groups hope that this day will be a day to call attention to the disease itself – but I would be surprised if there was an adult on this planet that has not heard of cancer – awareness of the disease is not going to stop people from dying.

I think that on World Cancer Day two things should happen – the media should dedicate their coverage to advances in science to beating the disease and there should be a world-wide competition to finding a cure.  Oh … And all survivors should take the day off from work.

As a person who has heard the words “you have cancer” – I don’t need a special day to remind me – I remember every day while I battle side effects of treatment and support friends and family who are also survivors.

What about all of those people in the world that have cancer and don’t have access to modern pain medicine and treatment? What about those small organizations that are struggling to serve underserved populations that have been forgotten all over the world? What about all the children that have to face the disease before they have even learned to walk?

World Cancer Day was created as a worldwide effort to dispel the myths about cancer but without the active involvement of every person on the planet to stand up and demand equal and fair care and more importantly a cure – I am not sure what a single day will accomplish.

You want to dispel a myth??? When you are diagnosed with cancer – it is not a death sentence. Every single person on this planet will die some day – and for those of us who have heard the world cancer by our doctor – all that makes us different is that the illusion of immortality is no longer distracting us.

I say on World Cancer Day you hug a survivor and take a pledge to enjoy the day we have all been given to live. Oh … and give all survivors the day off work!

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A Survivor’s Effort to Avoid Toxic Chemicals in Everyday Life

BPA FreeWhen I got diagnosed with breast cancer during the final month of my first pregnancy, hormones took on a new importance in my life. My doctors worried the estrogen flooding my body during pregnancy had fueled my tumor’s growth. They warned that chemo might shut down my body’s reproductive hormones and my ability to have another child.

Two years later, I began monitoring those hormones and was overjoyed when I learned I was pregnant with a little girl. Now, 10 years after my diagnosis, I am considering having my ovaries taken out in order to remove these engines of estrogen production—even though I know I can’t take hormone therapy to help me through the throes of menopause.
I work hard to stay healthy and protect myself from cancer triggers. But through my work at an environmental organization, I have learned not all hormone-related threats come from inside our bodies. Some come from chemicals found in the air we breathe, the water we drink, and the consumer products we use every day.  Many of these chemicals are known to mimic estrogen, and disrupt the development of breast tissue. Almost none of them are regulated by the government.

This has potentially grave consequences for women and girls. Mammary glands are the only body part that changes structure over time, and this extended development is guided by hormones. When toxic chemicals disrupt this delicate form of communication, the breast can get the wrong message and start restructuring in ways that lay the groundwork for cancer.

Take Bisphenol A (BPA). BPA is a chemical found in plastic bottles, canned foods and baby toys. It is so common that more than 90 percent of Americans have residues of the chemical in their bodies, according to the Centers for Disease Control. It is also a synthetic form of estrogen and has been shown to cause normal breast cells to behave like cancer cells and has been linked to prostate cancer, lower sperm counts, and early puberty.

Polycyclic aromatic hydrocarbons (PAHs) are another group of chemicals known to mimic estrogen.  PAHs are commonly found in soot—air pollution from burning coal, oil and gasoline. Some PAHs have been shown to cause mammary tumors in rats and to interfere with DNA repair in cells. And several epidemiological studies have linked PAH exposure to increased risk for breast cancer in women.

Similar estrogenic chemicals are found in pesticides and weed killers such as atrazine. Atrazine was banned in the European Union because of its potential to harm human health, but more than 75 million pounds are used in the United States every year and atrazine is frequently found in drinking water during growing seasons. Atrazine is a known hormone disruptor, and some studies have linked it to increased risks for breast cancer.

As someone who avoids eating tofu in order to reduce my exposure to estrogen, I find it alarming we are exposed to so many sources of synthetic hormones every day. But the more we learn, the more we can protect ourselves. We can buy organic produce to avoid pesticides like atrazine. We can use cosmetics free of toxic preservatives. And we can heat and store our food in glass instead of plastic. The Breast Cancer Fund has a terrific set of tips for avoiding hazardous chemicals.

But shopping alone can’t reduce all the risk, since we don’t always know where these chemicals may be lurking. There are more than 80,000 chemicals used in the United States, but the Environmental Protection Agency has required only 200 of them to be tested and only 5 to be regulated. It’s time the government stepped in and demanded manufacturers prove their ingredients pose no harm.

I will never know if toxic chemicals contributed to my tumor. But I do know that if reducing the amount of these chemicals in our lives will shield other women from the anguish of this disease, we must start demanding companies clean up their act now.

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Categories: Guest Bloggers

Upcoming Webinar – Rights in the Workplace: How To Navigate my Breast Cancer Diagnosis

Click to enlarge.

Click to enlarge.

Maintaining a regular work schedule after a breast cancer diagnosis can create a sense of normalcy and purpose for many young women. However, learning and understanding your rights in the workplace may feel confusing and unclear. In YSC’s upcoming webinar, S. Beth Stephens, Staff Attorney for the Breast Cancer Legal Project at the Atlanta Legal Aid Society, Inc., will explore these issues and many more. Ms. Stephens previously guest blogged for YSC on the topic of Navigating Breast Cancer and Employment.

Webinar Details:

Title: Rights in the Workplace: How to Navigate My Breast Cancer Diagnosis

Thursday, January 31, 2013: 7:30-8:30 p.m. EST

Registration link:

https://www1.gotomeeting.com/register/740114832

Speaker: S. Beth Stephens, Attorney at Law; Atlanta Legal Aid Society

This webinar will cover a basic overview of the Family Medical Leave Act (FMLA) and the Americans with Disabilities Act (ADA). Additionally, we will answer the questions:

– What are my rights and the rights of my caregiver to take time off of work?
– What do I have to disclose to an employer about my breast cancer diagnosis
– What are my rights when returning to work?
– How do I ask for accommodations to be able to do my job after a breast cancer diagnosis?

 

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Categories: Guest Bloggers

YSC Announces State Leader Program

We are 1 YSC.

We are 1 YSC.

It brings me great pleasure to announce the rollout of YSC’s State Leader Program, along with the names of our new State Leaders. This is a big deal!!

The State Leader program will link a regional network of experienced volunteer leaders who are committed to YSC’s mission together for the very first time!

As YSC becomes 1 YSC – State Leaders will act as THE link between YSC’s local and statewide communities (survivors, volunteers, & health care providers) and the YSC Regional Field Manager staff. Their contributions will also include identifying state resources, joining other key leaders on a Regional Leader Council, and contributing to outreach, education and awareness activities throughout their region.

These seasoned volunteers have shown an outstanding commitment to YSC’s mission. Their experience, skills and talents will have a significant impact on helping YSC reach even more young woman diagnosed with breast cancer in their region.

Please join me in congratulating these remarkable women and thanking them for all they do – each and every day – to ensure no young woman affected by breast cancer ever has to feel alone.

Their leadership and dedication to YSC’s mission is worthy of extraordinary recognition – since without committed volunteers like these individuals – we would be unable to support as many young women with breast cancer as we do! THANK YOU!!!

SOUTH MIDWEST WEST NORTHEAST
Texas Michigan California New Hampshire
Michelle Piña Amos Maureen Parrish Lissette Averhoff Jennifer Beaudet
Sandy Castillo Ellen Schwerin
Missouri Amanda Nixon Pennsylvania
South Carolina Kristin Ainsworth Rose Kristin Graham Jodi Inverso
Libby Seabrook Brown Angela McCourt Kim Hagerich
Shari Payne Kaple Wisconsin
Laura Kuecker Washington New Jersey
Florida Judy Haley Diana Di Mare
Linda Larkin Wendy Keating Victoria St. Martin
Karen Lawson
Georgia New York
Janice  Weaver Arizona Paulina Kashirsky
Felicia  Mahone Mikala Edwards Kate McGough
Mindy Carpenter
District of Columbia
Erin Price
Devin Boerm
Ohio
Melissa Richardson
Julie Klaski
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Congratulations Stacy and Lori!

YSC turns 15 years old this year!!! We will be celebrating throughout the entire year to recognize the hard work of SO many dedicated volunteers and staff. I feel honored to be able to take part in these acknowledgements, especially since they symbolize the hard work and dedication of so many young women with breast cancer across the country. The amazing volunteers and survivors in San Diego played a part … as did women in Atlanta … Duluth … Kansas City … Philadelphia … the list goes on … and on! There are so many people to thank and identify – we need an entire year to do it!

To kick off the festivities, I would like to pay homage to two spectacular women … Stacy Lewis and Lori Atkinson. Seven years ago this month, both of these outstanding women began their employment with YSC. As the organization turns 15 and we begin the year by commemorating this anniversary, we also start the year by hailing the achievements and long-standing tenure of these outstanding professionals. They have now BOTH been on staff longer than any other employees in YSC’s history.

That is something to celebrate!

 

Stacy Lewis, CHES, Chief Program Officer and Deputy Chief Executive

Stacy Lewis, CHES, Chief Program Officer and Deputy Chief Executive

Stacy Lewis started as YSC’s first Program Director on staff and she’s been leading us to greatness ever since! Stacy’s outgoing personality and brilliant mind is a driving force behind YSC’s solid reputation for delivering truthful and accurate data and materials. Stacy has built relationships with healthcare professionals, researchers and organizations that have strengthened YSC’s ability to support young women with breast cancer across the country. A few years after she joined YSC, Stacy was promoted to VP of Programming to take advantage of her strategic planning and management skills, especially with regard to the management of C4YW – the largest conference dedicated to young women with breast cancer in the world. One of the first things I noticed when I was hired as YSC’s CEO was Stacy’s incredible knowledge of science and survivorship issues – and I promptly promoted her to Chief Program Officer/Deputy Chief Executive. I truly believe that YSC is a smarter and better organization due to Stacy’s contributions. It is a great honor to be able to highlight her seven years of service to YSC. Thank you, Stacy!!!

 

 

Lori Atkinson, Chief Community Officer

Lori Atkinson, Chief Community Officer

Lori Atkinson began volunteering with YSC in 2000, so her relationship with YSC actually began 13 years ago. Before she joined YSC’s staff, Lori served as its Volunteer Chair for Central Indiana, where she worked hard to build YSC’s reputation and reach young women in her local community. In 2006, Lori was hired as YSC’s first Affiliate Manager and she diligently supported women around the country who were a part of an affiliate. There are very few YSC members who don’t know Lori – if you’re acquainted with her, I’m sure you know she’s one of the kindest and hardest working people there is. A few years after that, Lori was promoted to Affiliate Director of Development to foster YSC’s growing affiliate structure to help more young women with breast cancer throughout the United States. In my first year working at YSC, Lori and I worked very closely together to analyze the current affiliate model and determine how we could strengthen it. Everything Lori does focuses on the critical issue of how YSC can better reach and support young women affected by breast cancer. I know I can rely on her to always put our volunteers and survivors first in everything she does … always! In 2012, I was proud to promote Lori to Chief Community Officer of YSC. Her commitment to both YSC and the success of our volunteer programs is exceptional. I thank my lucky stars that back in 2000 YSC was there to not only support Lori in her journey as a young survivor, but also keep her actively engaged with YSC 13 years later (WOW!!!). Thank you, Lori!!!

 

These two women are the brains of the programmatic work that YSC is well known for. They both care deeply about our community and work tirelessly to ensure that every young women diagnosed with breast cancer in the U.S. knows we are here and that she’s a part of our family.

As we embark upon our 15 year anniversary today, please join me in thanking and acknowledging Stacy Lewis and Lori Atkinson for seven years of service to YSC. If one of them has touched your life or done something special for you during the past seven years, please consider leaving a comment to express your appreciation.

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Walking the Walk, Not Just Talking the Talk

(from left to right) YSC Senior National Programs Manager Megan McCann, YSC Volunteer/Advocate Amanda Nixon and me at the YSC table at the San Antonio Breast Cancer Symposium.

The San Antonio Breast Cancer Symposium (SABCS) is a BEAST of a medical conference. Everything about it — from the cavernous Henry Gonzales convention center to the incredible 200+ page program book — is big. Texas style. Five days of exhibits, sessions, advocacy briefings and networking. Almost 8,000 physicians, researchers and advocates from over 100 countries, converge in one place every year to get the latest, breaking news on clinical trials and breast cancer treatment.

As a survivor, patient advocate (patient advocates learn about the most recent breast cancer research so they can disseminate the information to their local organizations and constituents) and exhibitor, it was my privilege to represent YSC. Thankfully, I wasn’t alone in this task. My fellow YSC colleagues Megan McCann, Stacy Lewis and Jenna Glazer were there too. I expected people to wander by YSC’s table looking for giveaway pins, pens, etc. Instead, medical professionals from around the country … and the globe, stopped to take in our visuals, brochures, and the young women’s faces they saw on our posters. I spoke with breast surgeons, oncologists, nurses and patient navigators from all over the U.S. and interacted with people from Australia, Russia, Germany, Brazil, England, and South Africa. They all wanted to learn more about YSC and the women we serve.

At the end of each day, the Alamo Breast Cancer Foundation organizes a Hot Topics Mentor Session. Here an expert panel breaks down the day’s findings. The true clinical implications of the ATLAS (Adjuvant Tamoxifen Longer Against Shorter) trial were discussed. Doctors Julie Gralow (Seattle, Fred Hutchinson Cancer Center) and Judy Garber (Boston, Dana Farber) were asked how the findings might affect their treatment decisions. They immediately responded to the rumblings (many of the patient advocates were struggling with the results — the benefit of five more years of Tamoxifen, versus five more years of debilitating side effects). Quality vs. quantity of life became the hot topic! The session highlighted a very personal treatment choice between a young woman and her physician. FYI, I was very excited to discover that Dr. Gralow will be presenting a plenary session entitled, Young Women and Breast Cancer: the Future of Care at C4YW, the largest internal conference for young women affected by breast cancer that YSC co-hosts, which will take place February 22-24 in Bellevue, WA (on Seattle’s Eastside).

Triple negative (does not express the genes for estrogen receptor (ER), progesterone receptor (PR) or Her2/neu) and advanced breast cancer continue to challenge researchers. At the next Hot Topics discussion I attended, a young woman spoke passionately during the Q&A about her disappointment and concern with lack of research on triple negative breast cancer. Her passionate and heartbreaking argument ended with a call: Where is the plan? Why are we still discussing Tamoxifen after 20 years? It certainly made me think about the other side of the coin.

Other study findings of note: the better response to neoadjuvant chemotherapy (preliminary therapy, given before a main treatment like surgery) in young women versus older women; and the startling results from the UK START (Standardization of Breast Radiotherapy) trial which compared standard course radiation (six weeks), to short course (three weeks). The results showed equivalent outcomes with lower toxicity in the short course arm. Imagine the benefit to a young woman’s quality of life with a shortened radiation treatment cycle! Dr. Eric Winer (Boston, Dana Farber), acknowledged the findings, but injected a note of reason, and yes … humor. In a ringing voice, he stated, “Size still matters!” Size, in this case, referred to tumor size, of course! It reminded me of something I always read about cancer. Something so basic, yet life-saving: catch that tumor small … and early.

It was great to connect with Amanda Nixon, a stellar advocate from California with the Keep A Breast Foundation, and Sandy Castillo, a dynamite volunteer leader from Houston. Amanda shared these thoughts with me:

“Are we being over treated because we are younger? Who is paying attention to our fertility issues? Where is the sense of urgency?  But, I couldn’t help but feel hopeful for those diagnosed with early stage disease.  I really took SABCS as an opportunity to listen and learn from everyone around me.”

Time will tell if the results laid out at SABCS are working. But there IS activity, there IS movement. In fact, YSC continues to lead the charge. I feel honored to be a part of YSC’s upcoming Research Think Tank initiative, which will convene February 7-8 in Washington DC. Advocates and medical professionals from around the country will meet to refine a research agenda focused on issues critical to young survivors. So, I returned back to Ohio thankful for the opportunity to see this movement firsthand and encouraged by the researchers and physicians committed to walking the walk, and not just talking the talk.

Warmly,

Medha

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Categories: Guest Bloggers

YSC Rocked 2012!

 

Wow! What a year! So much happened, yet I feel like the year went by in a flash.

There are exciting things coming to YSC in 2013. Before we dive into where we are going, we should celebrate where we have been. 

 

Here is my 2012 Recap:

 

1 YSC, Face 2 Face

In the summer of 2012, I announced the launch of YSC’s “1 YSC” campaign to invite all young women with breast cancer to stand together as one united community. I spoke at the Affiliate Summit in July and began an open four-month discussion with our current volunteer leaders about how we would do this together. As a result, together as 1 YSC, we developed solutions to create a new community of engaged volunteers and survivors that we’ll be rolling out in 2013. Check out the video that kicked off this initiative.

 

Post-Treatment Navigator Released

BIG NEWS!!!! This year we released What’s Next? A Young Woman’s Post-Treatment Navigator, a guidebook based on a 2010 survey to 300 women in the YSC community. This insightful book, the third installment in YSC’s navigator series, explores a wide range of topics including: potential long-term side effects like chemo brain, early menopause, lymphedema and weight management; understanding emotions and relationships changes; living a healthy lifestyle, and more. This is a must read! Click here to download the PDF or order a free print copy.

 

East Coast Tour de Pink Sells Out!

Two hundred three-day riders and more than 50 one-day cyclists signed up for the 2012 YSC East Coast Tour de Pink. I rode all 200 miles for the first time and it was INCREDIBLE!!! Our Tour de Pink bike rides this year raised over $1.2 million and had 1,400 participants overall, including 200 survivors. Check out pictures here. I took my body back and kicked cancer’s butt!!! If you have not seen the amazing videos from this years’ ride, watch them. If you haven’t yet experienced one of our Tour de Pink events, I’m confident you’ll want to join us in 2013 after viewing these videos.

 

YSC’s YouTube Channel is Launched

YSC is now on YouYube. Have you subscribed to our channel? It rocks! Check out the new “WHY I RIDE” video series where various people talk about what inspires them to climb on a bike and ride 200 miles in Tour de Pink.

 

31 Faces, 31 Days BCAM Campaign

Breast cancer isn’t pretty and it’s not pink … That’s what we told the world this October! YSC highlighted 31 young survivors’ stories that represented the various challenges young women with breast cancer face and it was a huge success! Have you read these remarkable women’s stories? They are powerful and inspiring!

 

4th Annual Congressional Women’s Softball Game

I was honored to throw out the first pitch at the 4th annual bipartisan Congressional Women’s softball game in D.C., where the women of Congress play the women from the Washington Press Corps to raise awareness that young women can and do get breast cancer. The Congressional team lost this year, but I can’t wait to see what happens in 2013! Check out Rep. Debbie Wasserman Shultz and Rep. Jo Ann Emerson making an announcement about the game on the House floor.

 

NYC & Kansas City Host the Largest In Living Pink Events, in YSC History

With more than 600 guests, the national New York In Living Pink gala raised over $250,000, including a text donation campaign that raised $10,000 in less than three minutes. Honorees included YSC founding member, Tour de Pink co-founder and board president Lisa J. Frank, Dunnan Edell from CCA Industries, and Genomic Health. The Kansas City event hosted more than 400 attendees, raised $91,0000 and honored YSC survivor Brandi Palmer and John Michael Quinn, M.D. We have two awesome videos that were taken at this year’s events!

 

A New Partnership with Keep A Breast

YSC recently created a formal partnership with the Keep A Breast Foundation (KAB), based in Southern California, for a Treasured Chest program. This program is all about respecting the beauty of a woman’s body and I am grateful to partner with such an outstanding organization on this very cool initiative … check out Keep A Breast founder Shaney Jo and I discussing it here.

 

YSC’s New Blog

We launched YSC’s first-ever blog in May and it has been an extraordinary success! I’ve been chronicling my experiences training for my first Tour de Pink rides, leading YSC, navigating my “new normal” as a young breast cancer survivor, as well as providing general YSC updates and news. We’ve also had phenomenal guest bloggers, ranging from YSC staff and survivors to advocates, legal experts and medical providers. Thank you to everyone for helping the blog become part of YSC’s culture!

 

New Partnerships!

This was an exceptional year for YSC joining forces with noteworthy partners such as Oakley, Harley-Davidson, Emergen-C, Ford Warriors in Pink and the Athleta Iron Girl event series. I’m sure most of you saw the national magazine ads that Oakley secured to promote YSC … they were sensational! I’m thrilled that sales from Emergen-C Pink (pink lemonade flavor) will help provide support services for young women with breast cancer along with Harley-Davidson’s MotorClothes® Pink Label Collection. We also partnered with the Athleta Iron Girl event series and Ford Warriors in Pink this year – which was wonderful! I can’t wait to see what happens in 2013!

 

YSC’s Program Team Wins Best Abstract at BCY1

In the fall, YSC presented four posters at the International Conference for Young Women with Breast Cancer (BCY1) in Dublin, Ireland. Not only was it terrific that YSC was able to attend and collaborate with others around the world who are decided to the same mission, one of our submissions, entitled “Young and Metastastic: Addressing the Unique Needs of Advanced Breast Cancer in Young Women,” was selected as a best abstract and presented orally by Stacy Lewis, YSC’s chief program officer and deputy chief executive, to an international community of advocates, researchers and medical providers. Kudos to Stacy and her team!

 

A Petition Signature Drive to End Breast Cancer

YSC’s mission is to support young women who have been diagnosed with breast cancer, but we also want to do everything in our power to help end this disease once and for all. To show that we are serious about that commitment, YSC partnered with the National Breast Cancer Coalition (NBCC) to help obtain signatures for its petition to end breast cancer by 2020. I am proud to say the YSC community collected over 6,300 signatures in two months to add to NBCC’s petition to the President. Thank you to everyone who signed and/or helped obtain signatures to represent young women affected by breast cancer in this effort.

 

Three New Departments are Created!

New staff, new responsibilities and a new level of commitment happened in 2012. This year, YSC reorganized itself and created three new departments: Community Engagement, Technology and Marketing/Communications (Marcom). The new positions, departments and responsibilities of the talented staff will ensure that YSC is able to fulfill its mission and reach even more young women with breast cancer than ever before!

 

I attended my first C4YW!

Did you know that the C4YW conference we co-host is the largest conference for young women with breast cancer in the world?! No, I am not kidding! This year was my first time attending and as a survivor, I was blown away. To be around almost 1,000 young women just like me is life changing. I can’t wait until February 2013 – the conference will be on the West Coast for the first time. Have you registered yet?

 

Wow … 2012 has been a magnificent year! Each and every one of you played a part in these achievements – I thank you for that.

I am enthusiastic about what the future holds for YSC – but most important, I’m grateful YSC is here to support every young woman affected by breast cancer so she knows she’s not alone. That’s something to toast to!

 

Happy New Year!

 

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Full of Cheer

Isn’t this supposed to be the time of year that’s “full of cheer”? I don’t know about you, but these days I feel like night time comes right after lunch … and then there’s all the Christmas stuff. It’s sort of like “pink” in October … it’s everywhere and you can’t get away from it.

For me, Christmas has become a reminder of the way my life didn’t turn out because of breast cancer. Don’t get me wrong, I know there are many women out there dealing with situations far worse than my own and I’m not complaining. But when I see that darling little girl eagerly waiting to sit on Santa Claus’ lap, it feels like a punch in my stomach … it’s a reminder of the future I envisioned for myself  and the family I thought I’d have by now. Even I, the CEO of YSC, feel scared as I navigate my “new normal” as a young breast cancer survivor, especially this time of year.

But, around the corner is a new year … and that means C4YW!

C4YW is the largest gathering of young women diagnosed with breast cancer in the world … and for the first time ever, it will be on the West Coast in 2013 (February 22-24)!

For me, C4YW is a reset button … It’s always at the beginning of the year and young women with breast cancer from around the world come together to reaffirm their determination of survival, remind themselves they are not alone and learn about the latest advances in research and medicine that occurred since the last C4YW.

– If you have attended before, you know what I mean … and maybe this is the year for you to come back.

– If you are newly diagnosed, this event will change your life – you will never look at your survivorship the same way.

– If you’ve thought about going for a few years, but never actually did … now is the time!

– If you care for or support a young woman affected by breast cancer, C4YW has workshops just for you!

If you want to attend, but feel reluctant because you don’t know a soul – many attendees come to C4YW by themselves and leave with lifelong friends. Here’s an example: Mikala, diagnosed at 25, attended her first C4YW conference last year and has since become close friends with five other survivors in their 20s that she met there. Other women you’ll meet at C4YW are Lori, who supported herself by teaching belly dancing following her diagnosis and now conducts a belly dancing class at C4YW to help other survivors feel sexy. Nicole is YSC’s West Coast Regional Field Manager who lives in Seattle. She can’t wait to welcome you to town and introduce you to the other women who will be at C4YW!

For each of you looking forward to the holidays, I wish you and those you love an amazing celebration!

But for those of you who, like me, are struggling with the holidays and can’t wait for them to be over, I wish you peace and comfort. Maybe now is the time to sign up for C4YW and plan a fun getaway for early 2013 … the thought that I’ll see many of you the last weekend in February brings a smile to my face and makes me feel “full of cheer”!

P.S. There’s still time to apply for travel grants!!!

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Categories: YSC SYNC - Survivors