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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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!

Register as a YSC Volunteer

 

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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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Are You or Someone You Know Living with Metastatic Breast Cancer? We Need Your Input!

Voice-MegaphoneHave you ever been told by a fellow breast cancer survivor: “You went from stage I to stage IV? I don’t want to hear that!” Are you tired of the question: “How long will you be in treatment?” Do you feel isolated or ignored by researchers? Are your family and friends desperate for guidance on how to help you?

All the feelings and problems above were expressed to me by just ONE of the young women with metastatic breast cancer (MBC) that YSC serves. Feedback like this (read more below) and from the first YSC Research Think Tank meeting earlier this year is the driving force behind YSC’s new survey, It’s About You: Getting Insights From Young Women with Metastatic Breast Cancer.

YSC wants to know what YOU think you need, so we are asking detailed questions about your current situation and what has and has not worked for you. We want to get at the roots of the problems young women with MBC face and provide the breast cancer medical, research and support communities with in-depth information to help them identify and create impactful interventions to significantly improve your quality of life and fulfill your emotional needs.

 

If you are a young women living with metastatic breast cancer, please take our survey here.

http://www.surveymonkey.com/s/MyMBCYSC

If you know a young woman with metastatic breast cancer, please share this survey with her. Use the Facebook or Twitter buttons above or email her the URL.

 

We will be sharing the results from this survey in public forums and scientific meetings, including ABC2 – Advanced Breast Cancer Second International Consensus Conference being held this November in Lisbon, Portugal. Make sure your voice and needs are heard at this conference by responding soon.

If you have any problems with or accessing this survey, please contact Jean Rowe by email or phone at 317.417.9188.

Thank you!

P.S. YSC appreciates your input and will provide a thank-you gift to all young women with MBC who complete this survey.

 

Why is this important?

The following is from Kim, a young woman with MBC who is a YSC constituent and volunteer.

I am one of many young women living with metastatic disease. It’s an uncomfortable place to be. Sadly, we all know that very little research dollars go towards metastatic research, so that leaves a lot of us wondering if they (big researchers) even care about us. I try to navigate day-to-day life with this disease. As a single woman with no kids, I try to find my place in this world despite a big dark cloud over my head.

I realize that other than my fellow metastatic friends, no one can fully understand what it feels like. I sought out a support group only to be told by a woman with early stage breast cancer “you went from stage I to IV? I don’t want to hear that?” Neither did I, and I don’t want to live it. When I meet people and they learn of my disease they respond “but you look great” or “but you have hair.” Then there is “how long will you be in treatment?” Or my favorite “at least it’s just breast cancer, that’s curable, right?” No, sadly, it is not. No one understands.

I hope that by giving young women living with mets a voice, a place to fully express their experiences with honest and sincerity, YSC can shed light on what it is like for us every day. I also hope that the results can provide guidance to our friends, family, doctors and researches on how to help us find our way through this disease and a level of understanding for the burden that we bear.

 

 

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Fall Is Almost Here and YSC Tour de Pink Is Right Around the Corner! (Oh yeah!!!)

 

With my first year behind me, I am more confident in my ability to train this year on my awesome 2012 Liv/giant YSC Avail Inspire bike, designed by Emily Gresh, a fellow young breast cancer survivor and TdP rider.

This year’s YSC Tour de Pink® (TdP) is extra special for me since my survivor sister and dear friend, Kate McGough, has decided to ride her first TdP with me. I can’t wait to share this journey with Kate and introduce her to the Tour de Pink family!

Me, kneeling at center, with my 2012 Team Airavata

Me, kneeling at center, with my 2012 Team Airavata

TdP is a big commitment — I get it! “I’ll be back,” I promised my new TdP friends last year, and here I am preparing to tackle both the East and West Coasts yet again. My Airavata teams, symbolically named after the warrior elephant, are ready to roll!
2013 YSC Tour de Pink
Join Me @ TdP – Register Online Today!
— Or —
Support Jennifer’s Ride
 

 

Rachel Keenan and me with our new Liv/giant Avail Inspire bicycles

Rachel Keenan and me with our new Liv/giant Avail Inspire bicycles

Training is hard — trust me I know! Finding time to get on my bike, choosing a route and remaining motivated day after day is tough, but I ride for all the women who can’t ride, including my beloved friend Rachel, who we lost to this disease just two days before last year’s East Coast ride.

Fundraising is tough — even for me! I understand that asking friends and family for money can be difficult, but it’s for a good cause and worth it. If you are not already donating to another rider and do happen to have a few extra bucks (even $15 would be fantastic!), I’d be grateful if you’d support me (and, ultimately, YSC). Your money will go directly to YSC, providing free resources, education and support to all young women affected by breast cancer.

In 2012, I chronicled my experiences training for my first TdP as a means of taking my body back from breast cancer. If you read my posts, you know that when I first started out, I didn’t even like bikes, struggled to reach a mere five miles on an exercise bike at my gym, learned the meaning of the term “Car Back!” and pronounced my contempt for those hideous bike shorts!!!

Now, I’m back for more! You can do it too!

There’s still time to register — please sign up today and join me! Each ride has a one-day option. For those of you in the South, our TdP Atlanta event, which happens on September 28, offers several choices of cycling distances, as well as a 5k run or walk option.

Hope to see you on the road … and don’t be alarmed if I holler “Car Back!!!” at you.

Smiles!

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Categories: Taking my Body Back