It’s We Heart a Great Fit Time Again @ Nordstrom

 

YSC is excited to partner again with Nordstrom on the “We heart a great fit” event Friday and Saturday, October 25–26. Nordstrom stores across the country will be hosting a bra fitting event, where professional fitters will be on hand to help every woman find the right bra for her, and $2 from each bra purchased during the event will be donated to YSC!

This event is all about fit and choice, two ideas that Nordstrom has been offering breast cancer survivors through its In-Store Prosthesis Program for the last 20 years. The We Heart a Great Fit program is not limited to surgical bras and garments only, it’s available for almost any bra in the Nordstrom collection both in-store or through the online event Bras for a Cause.

At Nordstrom's April 2013 We Heart a Great Fit.

At Nordstrom’s April 2013 We Heart a Great Fit.

Nordstrom’s Certified Prosthesis Fitters will help you choose a bra, and their free, expert tailoring ensures that you will leave the store with exactly what you need. Call a few friends and make an appointment together then treat yourself to something at Nordstrom Café like YSC’s Director of Marketing Jennifer Johnson did. Jennifer is one of the co-authors of Nordie’s at Noon, the personal stories of four women “too young” for breast cancer.

Full program details are available on the Nordstrom “Before Your Appointment” page. Learn more about this program and hear from real clients in this short video from Nordstrom:

Please join us in thanking Nordstrom for its generous support of YSC, along with the company’s year-round programs to provide breast cancer survivors bras that work for them. ‘

Ignite-Volunteer-Opportunity-Nordstrom

 

 

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The Frank Family

 

YSC's 15 Volunteers Making a Difference

The Frank Family — Parents and Brother of a YSC Founding Member and Tour de Pink Volunteers

During the early years of her daughter Lisa J. Frank’s breast cancer experience, Carol Frank recognized a particularly unfulfilled need — resources for parents struggling to support their adult daughters who had been diagnosed with breast cancer.

Jerry, Lisa, Carol and Paul Frank (from left to right) at In Living Pink

Jerry, Lisa, Carol and Paul Frank (from left to right) at In Living Pink

To solicit assistance, Carol reached out to Susan Santangelo, the director of the Breast Cancer Survival Center in her home town of Norwalk, Conn. Together, they coordinated a one-day workshop, inviting mothers of survivors from the tri-state area to join them in Connecticut. There, 12 mothers confronted their fears and embraced hope for their daughters’ futures.

Register as a YSC Volunteer

Register as a YSC Volunteer

As Carol became involved with the cause, the rest of the family looked for ways they could volunteer. Knowing how much Young Survival Coalition (YSC) had done for their daughter (and sister), they knew working with YSC was the perfect way to give back! The opportunity came in 2004, when Lisa and fellow YSC volunteer Matt Purdue organized the first Tour de Pink (TdP) to generate funds and awareness for YSC.

Tapping strong local ties and large social networks, Carol and Jerry (Lisa’s dad) reached out to friends and relatives securing places for the riders to sleep and be fed along the route. From the first year until today, Carol and Jerry have remained committed to volunteering for TdP and have never missed a ride.

In 2008, Lisa’s brother Paul began volunteering adding his support as a member of the original TdP decorating squad. Over the years, the family’s presence at the East Coast ride has never faltered and in 2011, Carol received a volunteer appreciation award for her dedication to its participants.

The PB&J Queen, Carol Frank.

The PB&J Queen, Carol Frank.

These days, during TdP East Coast, you can find the Franks staffing the lunchtime rest stop together and offering encouragement and enthusiasm. As Paul checks in riders, making certain everyone is accounted for throughout the day, Carol and Jerry ensure cyclists have the nourishment to power through with Carol’s famous peanut butter and jelly sandwiches!

The Frank family knows firsthand how hearing “Your daughter has breast cancer,” affects the entire family. They believe, “It’s important to support all of the young women facing this disease in any way we can,” and say, “All of the people who take part in Tour de Pink are an extension of our family.”

Thank you to the entire Frank family for your dedication to the women of YSC and everything else you do to make a difference!

 

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Loretta North

 

YSC's 15 Volunteers Making a Difference Loretta North, Nurse Practitioner and YSC Kansas City Face 2 Face Educational Chair

Loretta-01At 42, Loretta was a full-time nurse practitioner and educator raising four-year-old twins with her husband. She never thought she would be told she had breast cancer. When diagnosed, Loretta was desperate to find someone who understood the struggles she was facing and could give her a survivor’s perspective on treatment options, especially reconstruction.

As Loretta searched online for information specific to “young women and breast cancer,” she found Young Survival Coalition (YSC). As a health care worker herself, she thought, “It’s imperative for all medical professionals dealing with young women diagnosed with breast cancer to have access to YSC’s resources and give them to their patients immediately upon diagnosis.”

Wanting other young survivors to know they weren’t alone, Loretta took on the role of educational chair with YSC in Kansas City. She expanded the group’s outreach efforts and garnered recognition for YSC among local oncologists and health care providers.

Loretta organized workshops covering topics such as genetics, nutrition and fitness, sex and intimacy, treatment updates, cardiac implications, bone health concerns following treatment and advocacy opportunities. These events incorporated YSC’s educational Factor Series, and the sessions provided a forum for the medical community to learn from survivors and dispel the myth that young women can’t get breast cancer.

Today, Loretta continues to educate herself, as well as others. She recently served as a consumer peer reviewer for the Department of Defense’s Congressionally Directed Medical Research Programs in Breast Cancer research and, in July 2013, attended the National Breast Cancer Coalition (NBCC) advanced advocate training program Project LEAD. Staying on top of the latest research, she makes it her mission to keep her colleagues informed.

Loretta-02

Loretta, thrid from left, at NBCC’s Project Lead.

Thank you Loretta for your dedication to connecting the medical community of Kansas City to the women of YSC (#YSCBuzz)!

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Kara Guzzetti

 

YSC's 15 Volunteers Making a Difference

Kara Guzzetti, Philadelphia Mets F2F Network Leader & YSC Tour de Pink® East Coast Rider from Team “Fighting Phillies”

Kara, at right, at a metastatic breast cancer conference.
Kara, at right, at a metastatic breast cancer conference.

Kara was starting her career as a lawyer when, at the age of 29, she found out she had breast cancer. She worked through her treatment, and, while she had support from family, friends and colleagues, she knew something was missing.

Fortunately, Kara was approached by another young survivor who told her about Young Survival Coalition (YSC) and the local South Jersey YSC group near her home. Since attending her first YSC meeting, she has been involved with and working to give back to the organization that gave her so much.

Three and a half years later, Kara was told her breast cancer had spread and her disease had become metastatic. Now living in Philadelphia and a member of the local YSC group there, she has met several young women living with metastatic disease. Many of these women felt, “It would be helpful to have a more intimate meeting just for this smaller group.” Kara agreed and got the ball rolling.

In July 2013, Kara contacted YSC’s Northeast Region Field Manager (RFM) and talked about the idea of forming a YSC Face 2 Face (F2F) group just for metastatic women in the Philly area. Together with YSC, she set the plan into motion.

The first meeting of the new F2F was held in September 2013 just months after the idea’s inception. Kara wanted an environment that would be warm, intimate and comfortable, so she hosted the first meeting in her home. Optimizing YSC’s social networks, she invited young women living in Philadelphia and the surrounding areas.

As a young women living with metastatic disease, she knows firsthand there are days that might be physically harder than others. The group intends to hold all their meetings at members’ homes allowing for members who may be unable to travel. Kara believes, “It’s important to make this F2F as accessible as possible to the women who need it.”

As Kara takes on this new challenge, she continues to pursue her goal of riding alongside her Fighting Philly teammates in YSC’s Tour de Pink® (TdP). Last year she received a free Giant bicycle, which inspired her to train hard and pedal the 200 miles from Philadelphia to the nation’s capital Washington, D.C. Kara rode again ride in this year’s TdP and lives every day focused on staying healthy and riding for her survivor sisters who can’t.

Team Fighting Phillies in 2012.

Team Fighting Phillies in 2012.

Thank you Kara for your determination to ensure YSC is able to meet the needs of young women living with metastatic breast cancer in Philadelphia.

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Ishiuan Hargrove, M.M.Sc, DABR

 

YSC's 15 Volunteers Making a Difference

Ishiuan Hargrove, M.M.Sc, DABR — Medical Physicist and Radiation Safety Officer at the Watson Clinic LLP, breast cancer advocate & Tour de Pink rider

At age 33, just five months after Ishiuan (e-shane) gave birth to her second child, she was diagnosed with breast cancer. Ishiuan’s job was the sole source of income for her family of four, and she feared the loss of her family’s health insurance.

Ishiuan with her bike at work.

Ishiuan with her bike at work.

As a medical physicist, planning radiation regiments for cancer patients, Ishiuan saw cancer every day. Additionally, as a woman of Taiwanese decent, she was frustrated with the lack of resources for young women affected by breast cancer whose primary language was Chinese.

Toward the end of 2007, after a cancer-related brain surgery, Ishiuan and her family moved back to Taiwan.

While in Taiwan, she began volunteering for Taiwan Breast Cancer Alliances (TBCA) . Through TBCA, Ishiuan took 42 mostly non-English speaking women to Brisbane, Australia, for the 15th annual Breast Cancer Support Conference. This trip reinforced her desire to help educate the Chinese-speaking population about breast cancer.

In 2012 and back in the United States, Ishiuan found Young Survival Coalition (YSC), while searching online for resources specifically for young women with breast cancer. Struggling with the negative impact on her knees from years of running, Ishiuan noticed YSC’s three-day bike ride, Tour de Pink® (#YSCTdP). A veteran of three-day walks, she eagerly signed up for the challenge.

Ishiuan training for Tour de Pink.

Ishiuan training for Tour de Pink.

Ishiuan assembled a team including her sister-in-law and her breast surgeon, and they raised $8,707 for YSC her first year. Ishiuan’s culture emphasizes the importance of karma, and she often says, “You don’t have to wait until the next life to get back the good you give.” Through involvement with YSC, her team for 2013 has grown to more than 20 riders, including several cyclists she met last year who she now considers close friends.

In February 2013, Ishiuan was diagnosed with metastatic breast cancer. Despite actively undergoing chemotherapy, she continues to work full time and train for Tour de Pink. Ishiuan is also a YSC State Leader and looks forward to utilizing her understanding of the Chinese language and culture to facilitate the delivery of YSC materials to Chinese-speaking women.

A very special thank you Ishiuan, for your determination to bring YSC resources to all young women, regardless of the language they speak.

Register as a YSC Volunteer

Register as a YSC Volunteer

 

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Stephen (Sven) Johnson

YSC's 15 Volunteers Making a Difference

Stephen (Sven) Johnson, Co-founder and Leader of YSC Champaign-Urbana Face 2 Face Network

Sven's wife Leslie Hammersmith.

Sven’s wife Leslie Hammersmith.

When Sven’s wife, Leslie Hammersmith, was diagnosed with breast cancer at 36, they were both shocked.

As Leslie’s cancer journey moved ahead, she wanted to start giving back to Young Survival Coalition (YSC) and those who had been a lifeline to her. Though neither of them had ever run a marathon, they discovered the charity runner program for the Bank of America Chicago Marathon, and the couple embraced the challenge.

Sven completed several races across the country raising over $15,000 for YSC from 2007–2010, but he didn’t stop there. When Leslie and Jennifer Arnold Smith began YSC awareness and support events in 2009, he quickly became involved.

Being part of his wife’s cancer experience spurred Sven into a lifetime dedicated to improving support and education for all people affected by cancer. From working with YSC to ensure a presence in local hospitals, at health fairs and community events, to being a welcoming and understanding presence at the YSC Face 2 Face (#YSCF2F) network meetings, Sven is dedicated to making sure no one has to go through cancer alone.

But he wanted to do more … so, being a musician, he utilized his ties to Champaign-Urbana’s music scene and started a live music fest called Beneath the Skin in 2010. This annual event raised nearly $5,000 over three years for YSC. During the fundraiser, local musicians perform and provide a platform for the YSC F2F to share information.

Sven says, “Speaking openly about the challenges Leslie and I faced connects me to other young couples dealing with breast cancer and lets them know they are not alone.”

Sven-01

Sven and wife Leslie at Beneath the Skin.

Thank you Sven for making both caregivers and survivors in Champaign-Urbana feel recognized and appreciated!

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John Hennessy

 

YSC's 15 Volunteers Making a Difference

John Hennessy — YSC Board of Directors and Vice President of Operations for Sarah Cannon

In his role as vice president of operations for Sarah Cannon, the global cancer enterprise of Hospital Corporation of America (HCA), John understands firsthand the importance of patient-centric cancer care.

John HennesseyAt Sarah Cannon, a patient has access to a full spectrum of services including wellness and screening efforts, diagnostic and treatment options — including cutting-edge research and clinical trials, as well as palliative and survivor care. In the management of such services and with his extensive background in health care operations, John helps others optimize limited time and resources to enhance the patient experience.

In 2005, John was asked by a young breast cancer survivor to help the Kansas City volunteers make connections and spread the word about Young Survival Coalition (YSC) in the area. John had always been passionate about the cause, and was excited to be part of the movement to improve the quality of life for women facing breast cancer-related challenges in Kansas City.

With the aim of increasing YSC’s footprint across the country, John joined YSC’s national board of directors. In this critical volunteer role, John donates his time and knowledge to ensure YSC’s presence both locally and through the YSC’s online Community Boards. John says, “It’s important to remember the breast cancer journey is different for everyone. It’s imperative that this diversity be embraced as YSC helps young women get the support that fits their individual needs.”

John at a recent YSC board of directors meeting

John at a recent YSC board of directors meeting

As a national board member, John volunteers diligently, helping YSC succeed in reaching more young women affected by breast cancer across the United States. He takes great pride in his involvement with YSC, praising its flexibility, innovation and services that address every stage of a young woman’s diagnosis.

YSC thanks John for his continued commitment to guiding the organization’s efforts to reach every young woman diagnosed with breast cancer, regardless of where she lives.

Register as a YSC Volunteer

Register as a YSC Volunteer

 

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Maureen Parrish

 

YSC's 15 Volunteers Making a Difference

Maureen Parrish — YSC Michigan State Leader & Co-founder of original YSC Metro Detroit local support group

Maureen was diagnosed in 2005 at the age of 35 with a rare form of breast cancer — invasive papillary carcinoma. When she heard the diagnosis, Maureen was a newlywed, just starting life with her husband. She desperately wanted to talk to another survivor her age about treatment options, reconstruction and working during treatment.

Maureen with husband Rob

Maureen with husband Rob

As Maureen searched the Internet for information about breast cancer in pre-menopausal women, Maureen discovered Young Survival Coalition’s (YSC) website and online community. There she connected with other young women who related to the challenges she was facing. Through these online conversations — Maureen found hope, encouragement and guidance from women who had walked down the same road.

Six months after joining YSC’s Community Boards, Maureen posted a message asking if there was anyone living near her in the Detroit suburbs. Soon after, on a Sunday afternoon, she was face to face with 12 other local young survivors. The meeting was a success and Maureen started to wonder how she could do more to reach other young breast cancer survivors in the area.

In 2008, she contacted YSC and was connected to Michelle Tubbs, Nicole Wasson and Lauren Reizen. These four women worked together to bring a YSC presence to Metro Detroit, through which Maureen was able to give newly diagnosed women a way to obtain information, attend local educational programs and enjoy the benefits of being part of the larger YSC community.

Maureen (2nd row, third from left) with the YSC Detroit

Maureen, 2nd row, third from left, with YSC Detroit group

As Maureen moved further out of treatment, she developed a passion for educating healthcare providers about YSC. Working with YSC’s Regional Field Manager, she diligently focuses on outreach to local hospitals, speaking with oncology departments and nurse navigators to ensure they recognize and address the unique issues that arise when a woman is diagnosed under 40.

Recently, Maureen became a YSC State Leader. In this role, she aims to expand YSC’s reach throughout the state of Michigan. Eight years after treatment, she still hears of young women who think they are alone. Maureen believes, “It’s imperative to arm a newly diagnosed woman with questions she can ask her medical team and the peer connections she needs to make this journey a little easier.”

By getting materials like YSC’s Newly Diagnosed Resource Kit (NDRK) into the offices of healthcare providers and the hands of more women who need it, she’s changing the misconception that young women don’t get breast cancer.

Thank you, Maureen, for your unwavering efforts to bring the resources and support of YSC to young women diagnosed with breast cancer in Metro Detroit.

Register as a YSC Volunteer

Register as a YSC Volunteer

 

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Beverly Mangerich

 

YSC's 15 Volunteers Making a Difference

Beverly Mangerich — Nurse Educator, Scripps Polster Breast Care Center, and YSC Breast Cancer Advocate

Twelve years ago, Beverly, a nurse educator at Scripps Polster Breast Care Center (Scripps) in La Jolla, Calif., witnessed firsthand the struggles facing young breast cancer survivors. While not a survivor herself, she listened when they said their needs were different from her post-menopausal patients. The young women sought peer support, and she knew she could help. With the encouragement of Scripps, she started a support group focused on the needs of women diagnosed with breast cancer under 40.

Beverly, at right, at C4YW, the Annual Conference for Young Women Affected by Breast Cancer

Beverly, at right, with volunteer Julia Stegeman at a YSC Summit in Kansas City.

In 2006, three survivors approached Beverly about expanding the meeting. The women had discovered Young Survival Coalition (YSC) online and joined YSC’s Community Boards, meeting others just like them from around the country. Beverly investigated YSC’s web site and educational materials and decided that the organization was just what she needed to reach even more young survivors.

As the gatherings in the San Diego area attracted larger numbers, Beverly explored how she could do more to help the medical community understand the unique needs of a younger breast cancer patient. Her first priority was introducing the center’s doctors and surgeons to young survivors. Being able to share YSC materials with them made them better able to serve the needs of their younger breast cancer patients.

Utilizing the facilities at Scripps, Beverly coordinated a series of educational lectures. Topics ranged from ways to stay positive during treatment to understanding reconstruction options. Long-term survival issues and yearly updates on research and the science behind breast cancer soon followed.

Beverly established a direct connection with the young women diagnosed or treated at Scripps and working with YSC strengthened her ability to reach a larger number of young women and deliver crucial information at an earlier touchpoint.

Beverly (in the "O") raising awareness in the community.

Beverly (in the “O”) raising awareness in the community.

Beverly volunteers her time because she believes in the power of connecting young women who have been diagnosed with breast cancer — and she is making a difference in her community every day!

Thank you Beverley for the work you continue to do to ensure no young woman faces breast cancer alone in Southern California! You are amazing!

Register as a YSC Volunteer

Register as a YSC Volunteer

 

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Dr. Susan Love, Young Survival Coalition and Susan G. Komen Partner This October To Show the World We Can Work Together To Drive Meaningful Change

 

Young Survival Coalition Logo Dr. Susan Love Research Foundation Logo Susan G. Komen Logo

“October” is a loaded word for breast cancer survivors. On one hand, the crisp fall encourages a warm blanket or hot toddy with friends. On the other, the onslaught of pink is enough to make any breast cancer survivor want to hide under the covers.

My hope is that Young Survival Coalition (YSC) can offer something TO DO this October that will actually drive REAL CHANGE.

Recently, I have had the honor to work with Dr. Susan Love, a pioneer in breast cancer research and now a cancer survivor herself. As a result of my conversations with her, I have been thinking a great deal about the “cost of the cure” or, more frankly, the awful and sometimes unspeakable side effects of cancer treatments that we accept as the price of survival.

Dr. Love and I have spoken at great length of the importance of changing the way studies are conducted and the fact that we shouldn’t ignore the consequences of today’s cancer treatments. Since young breast cancer survivors have to live with the long-term effects of treatment decades longer than their post-menopausal counterparts, she stressed to me her desire to study and learn from them, which thrilled me.

As Dr. Love and I continued our discussion, the idea of collaboration bubbled to the surface. We pondered how, during the past 30 years, the larger breast cancer movement has become fragmented. I conveyed to Dr. Love my aspiration for “real collaborations” that can drive “real change” — and my personal belief that this is possible.

As I thought about Dr. Love’s groundbreaking study and its possible impact on all young women with breast cancer, I decided this initiative was the right thing for YSC to get behind. My hope is that a true partnership that will bring the breast cancer movement back together, but first, and most importantly, I needed to ensure the proper crowd sourcing, so young women’s perspectives are captured in the research.

Tell Dr. Love everything that sucks about being a young woman with breast cancer here:
http://community.youngsurvival.org/index.php?/forum/78-be-a-part-of-history-join-the-how-study/

A few days later I was ecstatic to hear Dr. Love had reached out to the national headquarters of Susan G. Komen to see if their team wanted to join us in a joint collaboration …. Komen said yes!

This partnership creates enormous opportunity for the HOW study, especially when you consider Komen’s international reach. But, in all candor, it also raised concerns for me about how a partnership with a massive organization like Komen and an organization of YSC’s size would materialize.

The possibility of joining forces for a greater impact was too strong to resist, and I agreed to do everything in my power to make it work. “Working together” is not a new concept — far from it. However, when an industry or sector becomes as segmented and spread out as breast cancer has  — working together can be complex.

I am so pleased to report that the collaboration that formed between Komen, Dr. Love’s Foundation and YSC has been transparent, equal and respectful. Each organization is making this partnership a priority, and I am proud to be blazing forward on this new found path. We are openly talking about how our collaboration might serve as the cornerstone of best practices within the whole breast cancer movement.

As cancer survivors ourselves, we believe it’s time for the cancer community to no longer accept just being “happy to be alive” and instead demand treatments that do not have such a high price. It is my belief that we can make that happen — if we all work together.

As the CEO of the largest and most influential organization that supports YOUNG women with breast cancer, I am honored to work even harder this October to show the world that breast cancer organizations can work together to drive change and accomplish great things for the broader community.

To learn more about YSC’s partnership in this important study and get involved, please visit: http://www.youngsurvival.org/HOWstudy.

 

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