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

Wig Buying Tips from an Expert

TIna HeroldBeing diagnosed with breast cancer and told you’ll need chemo and your hair will fall out is hard enough. The last thing you need is drama when you shop for a wig. By sharing a few tips of lessons I learned the hard way, I’m hoping to offer you a less stressful experience.

First, let me say that you can approach this in different ways. Some women choose to go solo. Some bring their partner or spouse. Others decide to make it a party with their close friends.

Here are some pointers culled from my own wig shopping experience, personally wearing a wig everyday for the past six years and owning my wig boutique Wigged Out for the past five.

• Shop for a wig while you still have hair, if possible. It makes it easier to match both your natural color and hair style.

• Think twice about flying solo. You’ll benefit from a second opinion. Wear make-up and dress in the clothes you normally wear. It will help you to better coordinate your natural look.

• Ask your nurse or doctor for a recommendation of where to go. Remember, they see a lot of wigs … and can guide you with that first step.

• Try longer bangs to disguise eyelash and eyebrow loss. I tried bangs over one eye. It made me feel amazingly fun and chic! Plus, people didn’t notice my lack of eyelashes and eyebrows.

• Have the wig cut to frame your face. Sometimes there is just too much hair, which can make it obvious that you’re wearing a wig. Having the wig thinned out and/or cut to fit your face and body shape can make a huge difference in how it looks on you. Both synthetic and wigs made of natural hair can be cut.

I hope these additional nuggets are useful and make this process a little easier for you. Look for more tips in my next blog post.

Remember, you are not alone. If you have questions, please don’t hesitate to post them on YSC’s online community bulletin boards to get advice from other women who’ve walked down this road before you.

Or, you can contact me at http://www.imwiggedout.com or Wigged Out on Facebook.

Editor’s Note: See Tina’s previous post Wigged Out to learn more including the differences between natural and synthetic wigs.

 

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YSC Detroit F2F Hosts Survivor Education Event Funded by YES Fund Grant

 

One beautiful, breezy Sunday in May, I was sitting in my new hair stylist’s chair discussing my hair loss issues. We talked about my breast cancer treatment, which caused baldness,  hair regrowth … having a baby … more hair loss … and restarting Tamoxifen. AGAIN, more, but extreme, hair loss.

I was using a shampoo and conditioner called Nioxin, which was supposed to help clean and stimulate the scalp creating the best environment possible for hair growth. So far, it had been doing an okay job. My stylist told me what I was doing wrong and what I SHOULD be doing for better results.

LIGHT BULB!

I had to ask, “Would you have any interest in coming to one of my support group meetings to educate my friends about hair loss as well?” This is often a big topic of discussion at our Face 2 Face (F2F) meetings. It’s bad enough to have to lose your hair once, but to then watch it fall out in clumps DAILY after it all came back in? Really? Enough!

Theresa welcomed my idea with open arms and offered even more: “How about you bring your group into the salon for free scalp treatments (value of $25 each)?”

To turn it into a relaxing and social evening, I applied for a YES Fund Grant to help cover the costs of the event. Applying was an easy process, and, with the help of YSC’s Regional Managers, Medha Sutliff and Mollie Toland, we were approved and ready to move forward in no time at all.

Our Nioxin Hair and Scalp Event took place on June 26th at Theresa and Friends Hair and Nail Salon. Each of the 15 women who attended was given a consultation and a picture of their scalp under a microscope. Once they were given the treatment, they were shampooed, styled and then shown their squeaky clean scalp under the microscope again.

Members of the YSC Detroit F2F Network at Theresa and Friends Hair and Nail Salon for a Nioxin hair and scalp event.

Members of the YSC Detroit F2F Network at Theresa and Friends Hair and Nail Salon for a Nioxin hair and scalp event.

What happens with our scalps is like a fingernail, our hair follicles have a cuticle that  needs to be removed to enable new hair growth to proceed. Dead skin cells are washed away with the Nioxin Scalp Treatment to do just that. It’s like micro dermabrasion for the scalp. What’s the main ingredient? Sugar!

The event was a complete and utter success. The happy, tearful look on the faces of my friends leaving the salon with beautifully styled hair and a treatment plan for their hair loss was enough to make my year.

It turns out, I was able to put Theresa and Friends Hair and Nail Salon in contact with the cancer center where I was treated, Van Elslander Cancer Center. Together, they are planning more events for other cancer groups. I’m so thankful there are people are out there who have a desire and drive to help others!

YES Fund Grants

The purpose of the YES (You Are Not Alone Education for Survivors) Fund is to encourage YSC F2F Network members and State Leaders to organize educational events by providing reimbursement for qualifying programs.

These funds can be used for events that not only promote the mission of YSC but also allow survivors a time to network, share resources and receive valuable education. Priority will be given to educational events that follow YSC’s strategic priorities and are specific to the body of knowledge related to research, diagnosis, treatment, education, survivorship and/or other issues related to young women affected by breast cancer.

View the 2013 YES Fund Guidelines and Application (or download in MSWord).

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YSC: 15 Years of Knowledge, Resources and Support

YSC Turns 15Young Survival Coalition was founded in 1998 by three young women who were all diagnosed with breast cancer before the age of 35 to address a lack of information, support groups and research tailored specifically for this population. In the 15 years since, YSC has become the largest and most influential national nonprofit organization that supports young women affected by breast cancer. But, we still need to do more!!!

YSC’s wealth of resources and knowledge has come from listening to you, the women we exist to serve, and has helped us, with collaboration from the medical and research communities, develop programming just for you. Armed with these relationships and your feedback, YSC endeavors to reach and support the approximately 13,000 women aged 40 or under who are diagnosed in the U.S. every year … and we need your help!!!

To commemorate Young Survival Coalition’s 15th anniversary, we have been posting a “15 Facts” or “15 Tips” page on the 15 of each month on our website. Our lists began in January with YSC History and Accomplishments and will conclude in December. Upcoming topics will include: questions to ask your doctor, ways to give back to YSC, advances in treatment, ways to take your body back and intimacy. Have you seen these incredible resources and shared them with friends or family?

If you are a breast cancer survivor, a health care professional or someone interested in learning more because breast cancer has touched either your life or the life of someone you care about, we hope these lists will illustrate the scope of services YSC offers like YSC”s Newly Diagnosed Resource KitHelping Children Cope with Breast Cancer and the brand new What’s Next: A Young Women’s Post-Treatment Navigator.

If you are already familiar with our resources, attend a Face 2 Face local network (YSC F2F) or are a member of our online YSC Community or one of our dedicated volunteers, please take a moment to click the Facebook Like or Tweet buttons below and visit our Facebook page (or your favorite social media site) to share this month’s 15 Resources for Young Women or a previously published lists (see below).

Doing so will help us get the word out and meet the goal of supporting EVERY young woman in the U.S. who has been diagnosed with breast cancer! We cannot reach everyone who needs us without you!

Thank you all!

Previously Published Lists

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YSC Advocates Arm Themselves with Knowledge at Project LEAD®

Last week, my colleague Cindy Kicinski, YSC South Regional Field Manager, and I had the honor of attending Project LEAD® hosted by the National Breast Cancer Coalition (NBCC). Project LEAD® is a scientific training program for breast cancer advocates. The six-day, intensive coursework prepares individuals to engage meaningfully in conversations about breast cancer advocacy, activism, research and public policy.

From July 21–26th, we camped out in beautiful La Jolla, California, to take part in this important venture. YSC colleagues told us beforehand “they’ll keep you well fed” and “you’ll feel like you’re back in school” (both true), but no one prepared us for the sheer amount of information and enthusiasm that we would experience in that week’s time.

Fifty dedicated advocates came from around the country and Canada and spent the days listening to experts, participating in study groups and reviewing a very large binder of reading material.

YSC Advocates at Project LEAD®

From left to right: Megan McCann, Senior Manager, National Programs; Mikala Edwards, Arizona State Leader & Phoenix F2F Leader; Loretta North, Kansas City Volunteer; Cindy Kicinski Regional Field Manager (South); Jen Linares, Illinois Sate Leader; Leslie Hammersmith, Champaign-Urbana F2F Member; T. Eatmon Atlanta F2F Member; Amber Gillespie, Houston Heights F2F Leader & TdP West Coast Rider; Erin Price-Schabert, Virginia State Leader, DC Metro F2F Leader & TdP East Coast Rider.

At the end, we took away a greater knowledge of how breast cancer happens, what existing regimens can target these pathways and what promising treatments are in the pipeline. With this information, we are all better equipped to take part in decision making around research, public policy and community activism, for example.

Throughout the week, we heard from NBCC team members, including President Fran Visco, who emphasized the role we could play in helping NBCC reach its Deadline 2020, a concrete goal to end breast cancer by January 1, 2020, through strategic research on the primary prevention of breast cancer and the prevention of metastases (the spread of breast cancer beyond the breast tissue). We encourage you to learn more about how you can support this important program.

We are so proud to be part of an illustrious group of Project LEAD® graduates, past and present, and were especially happy to share the experience with others close to YSC (see photo at right). It is truly a testament to YSC’s strong and dedicated community that so many advocates took a week out of their busy schedules to fight for the end of breast cancer.

Thank you so much to the Project LEAD® staff, faculty, mentors and fellow attendees who made this such a special and inspiring week!

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