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.

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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!

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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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William Anthony Dean

 

YSC's 15 Volunteers Making a Difference

William Anthony Dean, Volunteer & YSC Tour de Pink® East Coast
Rider from Team “Why We Ride”

Breast cancer doesn’t just affect the person diagnosed. It’s a family disease, but does this only apply to blood relatives?  Not according to William Anthony Dean (Anthony).

Tony with friend Kristen Martinez (1974-2010)

Tony with friend Kristen Martinez (1974-2010)

For nearly five years, Anthony worked at Urban Outfitters with Kristen Martinez, a bright young woman who captivated everyone she met. She was Anthony’s boss and friend. As Kristen entered her 30s, she worked, spent time with family and friends and, of course, went out and had a great time! Then in 2005, she was suddenly and unexpectedly diagnosed with breast cancer. Not only did Kristen receive the diagnosis at the age of 31, she learned she had metastatic cancer — it had proliferated to her bones.

Kristen subsequently became very involved with Young Survival Coalition (YSC), serving as Chair and Chair Emeritus of its national In Living Pink gala.  As the music played and the drinks flowed at the 2009 event, Kristen asked Anthony to do “a little bike ride” for her. What she meant was, “Would you cycle 200 miles over three days in  YSC’s Tour de Pink® (TdP) to help raise money for the organization?” Little did he know that this “little bike ride” would change his life forever. 

Most people would back out of a challenge of this magnitude.  But Anthony pedaled from Hershey, Pa., to New York City in the 2009 Tour de Pink East Coast ride. He was amazed by the camaraderie he enjoyed with other riders — and their overwhelming support. When he told Kristen about his amazing experience, she vowed to join him in 2010.

Sadly Kristen passed away in June of that year, never having had the chance to participate in TdP herself. Three months later, Anthony rode his second TdP in her memory, armed with Kristen’s Mass card and her motto, “Make your mark, inspire change and leave your legacy.” He even recruited one of his best friends, Brandon Phillips, to join him.

That year the guys met Evelyn Hernandez, a young woman from New York whose father had passed away from lung cancer. At the time, Evelyn had no direct connection to breast cancer, but, unfortunately, it entered her life two months later when her 22-year-old-cousin, Kayla, was diagnosed with stage IV breast cancer, which had spread to her bones.

Fueled with an even greater determination to make a difference, the trio formed team “Why We Ride” in 2011 to honor both Kristen and Kayla. They raised more than $25,000 for YSC, and they did it because as Anthony says “It’s simply the right thing to do.”

In 2012, Anthony convinced more men to join … and even talked them into wearing pink tutus, created by fellow teammate and rider Christine Malloy! Team “Why We Ride” grew to 13 riders (10 men, three women, including José Falcon, Kayla’s father) and has 30 riders this year.

2012 Team Why We Ride

2012 Team Why We Ride

When asked why he continues to ride Anthony says, “I’m motivated by Kristen’s continued influence in my life and by all the survivors I’ve met along the way. They inspire me as they pedal to change their lives and leave their own legacies.”

Thank you Anthony for your unwavering dedication to YSC. As your team grows, so does YSC’s circle of support!

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Meet the Companies That Support YSC

 

Katy Perry #WeCanSurvive Concert

Katy Perry #WeCanSurvive Concert

The breast cancer community leads the pack in terms of how best to utilize cause related marketing to help raise money. While there some who sell “pink” products that don’t actually benefit a charity, the majority of cause-related marketing partnerships out there truly help nonprofits.

October is upon us, and as I begin to see a wave of pink on the horizon, I’ve been thinking a lot about these partnerships and how lucky YSC is to have such outstanding companies with whom we partner.

Many people have asked me, “Does this type of marketing really benefit the nonprofit?” The answer is … YES!!!

Oakley

Oakley

As YSC’s CEO and a young breast cancer survivor myself, I am proud of and stand behind every one of YSC’s cause-related partnerships. These companies are deeply dedicated to helping young women with breast cancer, which they do by helping to spread the message that YSC exists and also by donating money raised from selling products.

In my opinion, transparency is the most important characteristic of a great organization — and YSC is a great organization. If you have questions about YCS’s financials and fundraising, you can find and read through all of our financial documents on our website. If you want to know exactly who YSC’s partners are, please check them out here.

As someone who supports and cares about YSC on both a professional and personal level, it is important to me that others feel proud of our amazing and incredible organization. YSC’s for-profit partners are donors to YSC and they have chosen to support YSC because they care about young women with breast cancer.

So, as we prepare ourselves for the sea of pink, if you chose to purchase products from companies that are involved in Breast Cancer Awareness this October — I hope you will choose one of the companies that support YSC.

 

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YSC Honors Its Amazing Volunteers During Breast Cancer Awareness Month (BCAM) 2013!

 

YSC Ignite, 15 Volunteers Making a DifferenceTomorrow is October 1st. For small children it means there are only 30 days left until Halloween. For breast cancer survivors, it means they are going to be bombarded with pink. And for me, as CEO of Young Survival Coalition (YSC), it means I’m given the megaphone for 31 short days to try and generate as much awareness as possible that young women can and do get breast cancer.

YSC has given so much to thousands of young women with breast cancer around the country. This would not be possible without all of the incredible people who give so selflessly to the organization year after year.

Since I first benefited from YSC as a young woman in need of support after my own breast cancer diagnosis, I’ve personally experienced the passion, dedication and kindness of its volunteers. I will always be thankful to them to our volunteers for all they’ve done to ensure that YSC is here for every young woman who needs us.

To honor them, this October YSC will be featuring some remarkable volunteers who have gone above and beyond the call of duty to help young women with breast cancer … and this cause. They are families, friends, partners, co-workers and strangers. They’ve all given to YSC in their own unique way because they care.

YSC will be sharing their stories every other day throughout the month through social media. If these people or their efforts have touched your life in some way or you are moved by their inspirational stories, please leave a comment and thank them — or even share the post to help us spread the word!

 

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A Sneak Peek at October and How To See It All

 

There is so much going on this week and throughout October that I want to give you a sneak peak as well as some tips on where and how to keep up with all the exciting events, stories and launches that are coming your way.

I look forward to seeing you all on social media (check out our YSC Social Media cheat sheet below) and in person during the next four–six weeks! Thank you in advance for helping to spread the word that young women can and do get breast cancer!

Katy Perry

Katy Perry's We Can SurviveHave you heard that Katy Perry is throwing a benefit concert JUST to raise money for YSC? No kidding, this is HUGE!!! The part that excites me the most is the possibility that a young woman with breast cancer who has never heard of YSC and thinks she is alone might find us because of this awareness-raising concert.

The idea that she will  find her community of sisters at YSC — the idea gives me goosebumps! Follow all the concert buzz at #WeCanSurvive on Twitter or Facebook.

To show our thanks, I encourage everyone to send Katy Perry and the other artists performing with her a personal THANK YOU. They can all be found on Facebook and below are their Twitter handles.

.@katyperry .@SaraBareilles .@elliegoulding .@teganandsara .@KaceyMusgraves

 

YSC Tour De Pink (TdP) is HERE!!!

The TdP East Coast 3-day ride for 2013 starts this Friday, September 27th! Please tag YSC in any photos you post from the event with #YSCTdP and on Facebook.

Atlanta TdP is this Saturday, September 28th! Please tag YSC in any photos you post from the event with #YSCTdPATL and on Facebook.

For those of you riding West Coast, I can’t wait to see you there in a few weeks! Please tag YSC in any photos you post at the event with #YSCTdP and on Facebook. Not riding? You can send words of encouragement to all of the riders and young survivors taking their bodies back from breast cancer with #YSCTdP.

October Press

Have you seen YSC in all of the hottest October mags? Check out the amazing young survivors who are featured!

 Vogue October 2013  O - The Oprah Magazine October 2013 Allure October 2013 Glamour October 2013 SELF October 2013

Personal Stories Are Powerful

Are you blogging about your breast cancer experience (or have you in the past)? If so, I encourage you to add a link to your blog to the Blogging Breast Cancer forum on YSC’s Community Boards. By sharing your story, you will reassure other young women they are not alone and let them know there are others out there who “get it.”

YSC Social Media Cheat Sheet

No matter your favorite social media site (Facebook, Twitter, Instagram or Pinterest) here is a cheat sheet to keep you connected to everything going on at YSC this month.

“Like” YSC’s national Facebook page to stay up to date on YSC activities around the country!

“Like” your regional YSC Facebook page to ensure you’re up to date on YSC events happening in your area.

Midwest Northeast South West

 

Follow YSC on Twitter @YSCBuzz and please include YSC in related conversations by using #yscbuzz.

Looking for other hastags to follow? Try #bcsm, it stands for “breast cancer social media,” or #youngwomen.

If you use Instagram follow us @youngsurvivalcoalition to see photos directly from our events. Please mention us by using #youngsurvivalcoalition so the photos you post from events are in our feed and we can share them too!

Check out the cool stuff we have pinned on Pinterest.

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