I Hate Breast Cancer!

How StudyI am sorry – I have to say it. I hate breast cancer. I hate that it can take a young woman too soon and leave families to grieve. I hate that it leaves scars on everyone it touches on both the inside and the outside. I hate that people think incorrectly that it is always a “curable cancer” as it sneaks around and continues to kill, injure and destroy.

I know that during the holiday season I should be focused on how much I, and all of us, have to be thankful for – but I don’t feel like it. I feel like saying what we all feel – I HATE BREAST CANCER!

Ok – I know throwing a temper tantrum is not really going to change anything, so let’s talk about something that actually WILL make a difference….. the Health of Women (HOW) Study. Have you heard about it? The HOW Study is awesome…. and I don’t say that about many studies.

This is a study for ALL women.

All ages.

All colors.

Women who have been diagnosed with breast cancer.

And women who have not been diagnosed.


If you have never been diagnosed – but care about someone who has – this is an easy way to make an impact. In order to find out what might be causing breast cancer, we need women who have NOT been diagnosed to participate, too.

What I also love about this study is that Dr. Susan Love is determined to find and expose the true side effects of breast cancer treatment – and NO ONE else is focusing here with such determination. If you have breast cancer and are young – you need to sign up and share with Dr. Love all of the side effects you have experienced – so that the voices of all young women with breast cancer are heard loud and clear.

Here is a quote from Dr. Love regarding what she is finding so far…

“Most interesting to me was the fact that many of you were not told or at least did not remember being told about the side effects that we, as a medical profession, know will happen. For example, you will always be numb after a mastectomy and will never get the feeling back. It has to do with the way the operation is done cutting all the sensory nerves. In addition, a reconstructed breast will never have sensation! I used to yell at the plastic surgeons when I was in practice because they would say things like ‘your new breast will look normal and feel normal.’ Other long term consequences such as neuropathy, pins and needles and sensory problems from the chemotherapy also don’t get better. Some of the sexual issues, i.e. loss of libido or dryness, can be caused by drugs especially Aromatase Inhibitors and could resolve once you stop taking them. But, if it is caused by being put into menopause, they probably won’t resolve. While most of us would accept the consequences of treatment to save our lives, we really should know what to expect! When we formally collect all the data on these issues in the HOW study in the spring, we will present it to the medical profession and see if we can use it to change pre-treatment education.”

So as we begin to focus on another year coming to an end, let’s do something that will actually make a difference. Join me in signing up for the HOW Study. It’s simple, important and will make a real difference for thousands of women – how often are you given that opportunity?

If you are a woman – sign up and ask five of your girlfriends to do the same. It is easy – all you have to do is share this link: www.questionthecure.org

Remember – you do not have to be a breast cancer survivor to sign up – you simply need to be a woman who cares.

Join me – let’s do something together that makes real change!

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State Leaders Throw YSC a 15th Birthday Party

Happy 15th Birthday YSC! What do balloons, cake and frozen yogurt have to do with YSC?  They were all part of YSC’s 15th birthday parties held by YSC state leaders across the country. These events were held to celebrate YSC’s anniversary and provide networking opportunities for young women.

State leaders invited their friends, family and coworkers to celebrate the work YSC has accomplished, build excitement for upcoming programs and let people know how they could become involved as a volunteer through the new volunteer engagement initiative, Ignite.

YSC Birthday Party @ NordstromSeveral state leaders combined their YSC birthday party with the Nordstrom We Heart a Great Fit event. Ohio State Leader Julie Klaski had a group of girlfriends meet at Nordstrom, where they shared treats, had a great shopping trip and helped support YSC.

In Maryland, State Leader Lori Yori hosted a YSC birthday party for oncology nurses.  She used the event to ensure the nurses in her area know about YSC and are able to inform their patients about YSC’s programs and services.

Zumba for YSC!Washington State Leader Karen Lawson combined her passion for volunteering and riding in YSC Tour de Pink into an occasion that celebrated both events.

Celebrate 15 years of YSC by giving the gift of your time; sign up today to volunteer for YSC!

Register as a YSC Volunteer

Register as a YSC Volunteer


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Celebrating 10 Years of YSC Tour de Pink

Lisa, at left,  and fellow YSC Founding Member Jill Frank with a colorful TdP fan.

Lisa, at left, and fellow YSC Founding Member Jill Frey with a colorful TdP fan.

This year was incredible at Tour de Pink (TdP) for so many reasons including a fabulous milestone – celebrating the 10th anniversary Tour de Pink East Coast ride. Ten years ago, Matt Purdue and I were able to convince four other cyclists plus support volunteers to ride from Boston to NYC to raise money and awareness for YSC. That small but powerful effort has grown to more than 1,000 participants and over $1 million raised annually between the East Coast, West Coast and Atlanta TdP rides.

After each year’s Tour de Pink I look back and say, it went by so quickly, I didn’t get any good pictures, I can’t believe I won’t see all of these amazing people for another year and many other thoughts. And this year was no different. However, in a way I cannot quite express, there was something different this year in a very, very positive way.

The energy on the rides was fabulous. Everyone was upbeat, excited to ride, volunteer or work their particular role. Balancing this energy was a subtle peacefulness and relaxed atmosphere. I know that sounds odd and mutually exclusive. I really wish I could articulate it better. It was just something intangible yet beautiful.

For those of you who have not experienced Tour de Pink (#YSCTdP), at the Friday and Saturday night dinners we invite a survivor and a caregiver to speak to the participants. They tell their story, why they are riding or volunteering and what the ride means to them. Everyone has their own way of expressing this.

Some do so through touching stories, others through tears and still others through humor (like the Top 10 reasons to ride in Tour de Pink á la David Letterman’s Top 10). But each story only further supports the meaning of the ride and the bond we all form with each other for a common cause — to raise money for YSC and its programs so that no young woman has to go through breast cancer alone.

Get a glimpse at what an amazing time we had at Tour de Pink in the 2013 East Coast and West Coast online photo albums (all photos by Jake Orness). Registration for next year’s rides will open in early 2014, so please visit our website then to find out more.

Finally, I’d like to share something said to me this year that is perhaps my favorite line from the 2013 YSC Tour de Pink. Now, granted, there were a number of really great things said along the way, but, when my metropolitan (that’s a new nickname for metastatic because it sounds so swanky!) sister rode her bike next to mine on day two of West Coast Tour de Pink she said, “You know what I decided today? I decided today I don’t have cancer!” And you know what? … She lived that on the ride and tries to live it every day.

And so another Tour de Pink season ends and we close out with the same reason we ride every year … Because We Can!


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Annabel Berney


YSC's 15 Volunteers Making a Difference

Annabel Berney — YSC Chanpion

Annabel at her bat mitzvah.

Annabel at her bat mitzvah.

Charity and giving back are cornerstones of Annabel Berney’s upbringing.  The importance of aiding others — either working hands-on or raising critical funds — has been stressed to her since childhood. As Annabel began preparing for her bat mitzvah, marking her (religious) journey to adulthood, she started to wonder how this event could have an even larger impact.

Annabel’s Aunt Nancy, her mother’s sister, is a young woman living with metastatic breast cancer. First diagnosed with breast cancer at age 28, Nancy learned three years later, when Annabel was two years old, that the cancer had returned and spread to her sternum. Throughout Annabel’s life, her aunt has demonstrated what it means to be strong and to persevere, showing Annabel she can do anything she puts her mind to.

When Annabel told her mother that she wanted to utilize her bat mitzvah to raise money for breast cancer in honor of her aunt, her mom was overwhelmed. Family and friends already familiar with Nancy’s struggle applauded Annabel’s efforts with generous donations.

Annabel and her Aunt Nancy.

Annabel and her Aunt Nancy.

Annabel’s appeal raised over $13,000 and brought the message of breast health to a group of blossoming young women. As she focused on preparing for her bat mitzvah, Annabel noted that, “YSC took care of every detail behind the scenes; the donation process was simple.”

Register as a YSC Volunteer

On that special day, Annabel acknowledged her aunt and all the other young women facing similar challenges. She thought of others, not herself, looking to inspire those in her circle to do the same. Annabel’s commitment to being of service didn’t end that night. At school, Annabel takes part in community projects such as beautifying local parks, holding Thanksgiving dinner for those who are alone on the holiday and participating in a school buddy project, where she spends time with younger kids at a local public school.

As Annabel gets older, she hopes to continue raising awareness among her peers that young women can and do get breast cancer.

Thank you Annabel, for remembering every young woman with breast cancer as you honored your aunt on your special day!

To host a successful fundraising event like Annabel’s:

• Download our Community Fundraising Guidelines.

• Create your own fundraising page.

• Publicize your event.



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Dustin Brady


YSC's 15 Volunteers Making a Difference

Dustin Brady — Volunteer, Tour de Pink West Coast Rider

Display in Honor of Michelle Weiser at Giant Headquarters.

Display in Honor of Michelle Weiser at Giant Headquarters.

In 2008 Dustin was engaged to Michelle Weiser. When Michelle was diagnosed with breast cancer at age 38, Dustin helped her fight back in every way possible. Sadly she passed away, and Dustin has honored her legacy by saying F-You to cancer ever day since.

Dustin signed up for YSC’s Tour de PInk (TdP) West Coast event and, as a cyclist himself, eagerly joined the Giant Bicycle “Weiser’s Army” team. His first year, Dustin raised $10,000 for YSC.

Inspired by the courage he saw displayed by every survivor riding and the camaraderie he felt during the three days, he made a commitment to not only stay involved but to raise more money!

Dustin expanded his line of F&CK CANCER merchandise (which he sold while fundraising) and created an online store to promote and sell it. Proceeds from these products go to his YSC TdP team and help YSC (#YSCBuzz) continue providing support to all young women diagnosed with breast cancer.

This year he raised an astounding $60,000 for YSC!

Dustin and Noel

Dustin rides to not only honor Michelle’s memory but also to support all the young women currently battling this disease. Dustin doesn’t see TdP (#YSCTdP) as just another ride, he says “It’s three days of family, love and encouragement.”

Thank you Dustin for your unwavering support of YSC. We say F-You to cancer with you!


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John Keating


YSC's 15 Volunteers Making a Difference

John Keating — Founder, Seattle Face 2 Face Network “Reservoir Dawgs”

John created an organized support group just for husbands and partners when his wife was diagnosed with breast cancer at age 30.

John and wife Wendy.

John and wife Wendy.

In the winter of 2008, John was self-employed and focused on his business, until his wife Wendy heard the words, “You have breast cancer.” The news surprised the couple and changed their lives. Wendy began chemotherapy in the early spring of 2008 and continued into the fall of the same year. What was supposed to be outpatient chemotherapy shifted to an inpatient treatment plan. John worried Wendy’s chemo was taking a toll on her physically and mentally.

John happened to tell his physical therapist about his wife’s diagnosis and she suggested Wendy call her colleague, another young woman with breast cancer involved with Young Survival Coalition (YSC). Wendy found other women who understood her challenges.

Register as a YSC Volunteer

Not long after that, John began to wonder, where’s the group that supports the co-survivors? John then had an idea: why not create a time and place for the guys to get together? Carl Taylor and Brandon Wright, both husbands of young survivors agreed, and John had just the place — the Reservoir Tavern. A new YSC Face 2 Face (F2F) “The Reservoir Dawgs” began.

The Resevoir Dawgs.

The Resevoir Dawgs.

To make this endeavor successful, the men decided on a few guidelines: Meet the first Friday of every month, cell phones couldn’t ring (unless they expected a family emergency) and no medical advice could be given.  The guys also took up a monthly collection to assist any of the young women who might need it. Money was thrown in the bucket if they spilled a drink or a cell phone rang and most importantly if you spilled another’s drink — you not only owed, but you bought him another!

The sole purpose of the night was to give the guys time to discuss their own questions and sometimes even their fears.

The Reservoir Dawgs grew, and the members came to depend on each other, helping with childcare and assisting each other in the job market. Building friendships that will last a lifetime.

Thank you John for taking an active role and creating a real and lasting solution to give support to caregivers!

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Robert and Nancy Piña


YSC's 15 Volunteers Making a Difference

Robert and Nancy Piña — Parents, Caregivers and Members of YSC Houston Face 2 Face Network

Lisa, Robert & Nancy volunteering with YSC at an event in their community.

Lisa, Robert & Nancy volunteering with YSC at an event in their community.

In 2005, the Piña’s daughter was diagnosed with breast cancer at 33. A close-knit family, Robert and Nancy strategized how they could support Michelle through this challenge. Nancy became the primary caregiver, accompanying Michelle to doctors’ appointments and trying to ask the right questions. She took a leave from work, then early retirement.

As Michelle underwent chemotherapy, she sought resources for young women with breast cancer and found Young Survival Coalition’s (YSC’s) website and Community Boards. By the end of her treatment, Michelle was attending events hosted by the local YSC Houston group.

The annual Houston YSC gala in the fall of 2008 provided Robert and Nancy the opportunity to see firsthand what YSC meant to their daughter. Although they spent most of the night setting up and tearing down, they were grateful to witness young women kicking up their heels and forgetting the day-to-day business of breast cancer.

Register as a YSC Volunteer

Inspired to do more, they attended a local YSC planning meeting and recruited other family members, including Michelle’s sister, Lisa, and both of her grandmothers.

The Piñas wanted to educate other families to be empowered caregivers. Robert and Nancy felt “It was important for parents to learn all they could about what a young woman with breast cancer might experience. Knowledge will make them less fearful and better able to support their daughters.”

Michelle with other young survivors at the Houston ILP (#YSCILP).

Michelle with other young survivors at the Houston ILP (#YSCILP).

As part of their efforts, they spearheaded the distribution of YSC’s Newly Diagnosed Resource Kit (NDRK) in Houston. Over a span of four years, the family helped to assemble and distribute nearly 1,200 NDRK’s, an amazing feat!

Thank you Robert and Nancy for all you and your family have done to educate other families and medical providers in the Houston area!


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Jill Frey


YSC's 15 Volunteers Making a Difference

Jill Frey — Founding Member of YSC, Tour de Pink Rider

For the past 15 years, Jill has generously donated her time and energy to Young Survival Coalition (YSC), which she has been part of since its beginning. Jill cycles in the annual Tour de Pink (TdP) breast cancer bike ride, is a former board member and currently serves on YSC’s development advisory committee. As a sustaining donor and a member of YSC’s Leadership Circle, Jill supports YSC’s mission to be a strong voice for young women with breast cancer.

Jill Frey with, from left to right, her grandmother and mother.

Jill Frey with, from left to right, her grandmother and mother.

At 31, newly married and planning a family, Jill was diagnosed with breast cancer, as were her mother and maternal grandmother before her — both in their 40s. Even with the love, support and understanding of women so close to her, Jill felt alone.

After her husband Jonathon told her about a colleague’s sister, Lisa Lesko, who had been diagnosed before 40, Jill reached out to and connected with Lisa. In November 1998, they attended a support group meeting together in New York City for young women that became the catalyst for YSC.

As the idea of YSC became a reality, Jill drew on her passion and talent for fundraising to co-chair the group’s first fundraising event with fellow YSC founding member Lisa J. Frank. The event raised several thousand dollars and introduced YSC to a broader audience.

Register as a YSC Volunteer

By 1999, it became clear that YSC needed a brand identity, so Jill collaborated with a graphic designer to create YSC’s original logo. Later that year she helped to secure YSC’s first corporate sponsor, the hair products company Goldwell, which funded YSC’s first brochure, “Just Because You’re a Young Woman, Doesn’t Mean Breast Cancer Can’t Happen to You.”

With these new materials in hand to help explain the uniqueness and scope of issues faced by young survivors, the women of YSC headed to Washington D.C. Led by co-founder and breast cancer advocate Joy Simha, they made YSC’s first connections with members of Congress and leaders in the breast cancer world.

Jill at the 2012 Tour de Pink East Coast.

Jill at the 2012 Tour de Pink East Coast.

In 2006, Jill took her volunteering to a new level by signing up for TdP. Unsure about being able to cover the distance of the three-day ride, Jill trained hard and conquered every mile. Ever since, she rides each year to raise money for young women fighting breast cancer — like her sister Judy, who was originally diagnosed 10 years ago and is now battling metastatic breast cancer. Jill believes, “It is important to be excited about your role as a volunteer. That excitement will keep you committed to the organization and helping it to grow.”

Thank you Jill for your amazing contributions over the past 15 years and for your continued dedication to the mission and vitality of the organization you helped start!


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Join Katy Perry & Friends in Supporting YSC


Katy Perry #WeCanSurvive Concert

Tomorrow, an unprecedented event will take place for Young Survival Coalition — the Katy Perry & Friends #WeCanSurvive Music for Life concert benefiting us! YSC is  touched by the incredible show of support for young women affected by breast cancer by Katy along with Sara Bareilles, Ellie Goulding, Tegan & Sara and Kacey Musgraves. Strong female artists supporting the strong women of YSC … it is going to be amazing.

In honor of Breast Cancer Awareness Month and her new album, PRISM, which feature the smash single “Roar,” Katy says, “I’m so proud to be playing songs from my new record, PRISM, at the iconic Hollywood Bowl alongside a hand-picked group of my favorite female artists. It will be a night of celebrating fantastic music and life, all for a very important cause!”

A portion of the proceeds from ticket and merchandise will be donated to YSC, the sole beneficiary of #WeCanSurvive. YSC will be at the concert, with a group of young survivors, distributing our materials and raising awareness about young women and breast cancer.

The acknowledgement YSC and our cause are receiving from these spectacular artists and the event sponsors gets the word out to a huge new audience that is paramount to bringing us closer to our goal of reaching every young woman who is diagnosed with breast cancer that needs us.

So, how can you be a part of it all? Join Katy in supporting YSC
by texting “SURVIVE” to 80888 to donate $10 to YSC.*

Follow and share the excitement and pictures from tomorrow’s concert on Facebook, Twitter and Instagram. Our heartfelt thanks go out to  — Katy, Sara, Ellie, Tegan & Sara and Kacey as well as sponsors CBS Radio and Citi — for their incredible show of support for young women affected by breast cancer.


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Courtney Preusse


YSC's 15 Volunteers Making a Difference

Courtney Preusse — Breast Cancer Advocate, YSC Research Think Tank Member and Junior Researcher at Fred Hutchinson Cancer Research Center

Courtney at a YSC Seattle meeting.

Courtney at a YSC Seattle meeting.

Courtney had just moved to Seattle and accepted a new job when, at 31 years old, she was diagnosed with breast cancer. With friends and family back in D.C., over 3,000 miles away, she was alone and completely unprepared to deal with her diagnosis.

At a workshop exploring reconstruction options, the only other young survivor in the room approached Courtney. As it happens, she was involved with Young Survival Coalition’s (YSC) local Seattle group. This one connection provided a pathway to the information, encouragement and resources that Courtney so desperately sought.

At her first YSC support group meeting, Courtney met other young women who could relate to her struggles, understood this new language of cancer and made her feel comfortable enough to discuss the most intimate details of the challenges she was facing.

Register as a YSC Volunteer

At the end of her treatment, Courtney wanted to give back and be of service to others in the cancer community. She knew there was a lack of research on how breast cancer affected young women’s bodies and its long-term effects, and she wanted to change that.

When the opportunity for Courtney to work at Fred Hutchinson Cancer Research Center came up, she took it. Though her job didn’t directly involve research, she saw it as a possible way to gain access to the researchers. Over time, Courtney began to reach out to those working on breast cancer issues and convinced them her patient’s perspective could help.

She noted that doctors often become so mired in the science and clinical results of the research, they often forget the larger issues pertaining to a patient’s quality of life. “It’s critical to incorporate the patients’ needs into all research, and I knew the more educated I was, the greater impact I would have,” stated Courtney. Courtney reached out to YSC in hopes she could create a stronger connection between YSC’s constituents nationwide and the cancer center.

Courtney at the inaugural YSC Research Think Tank meeting.

Courtney at the inaugural YSC Research Think Tank meeting.

In 2012, Courtney’s involvement with YSC expanded when she was chosen as the patient advocate chairperson for the Pregnancy and Breast Cancer working group of YSC’s Research Think Tank. The goal of this 18-month initiative is to drive real change by refocusing the research community on the tough questions that will improve the quality and length of life for young women diagnosed with breast cancer.

Courtney believes that researchers need to be reminded of the person behind the cancer, and YSC serves as a catalyst for her to do that. Whether it’s a newly diagnosed woman or someone living with metastatic disease, Courtney’s volunteer work with YSC gives them a voice.

Thank you Courtney for your persistence and determination to improve the understanding of researchers working on the science behind breast cancer and how it affects young women.


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