Year In Review - Women Survivors Alliance

2014
...because cancer doesn’t end when
treatment does.
Year In Review
A NOTE FROM THE CO-FOUNDERS
Dear Friends and Colleagues,
Wow - just look how far we have come! 2014 was an inspirational year that brought tremendous
growth for the Women Survivors Alliance.
*The National Women’s Survivors Convention welcomed year two and because of its
success and the love of the city of Nashville, a big decision was made. SURVIVOR
ville 2015 was created and will occur during National Cancer Survivors weekend
June 6 & 7.
*We repackaged our magazine, aptly renaming it NOU Magazine.
A Note From The
Co-Founders
*We debuted a stage show entitled My 2nd Act: Survivor Stories from the Stage to
not only celebrate courageous survivors across the country, but to serve as a fund
raising entity as well.
*In addition, the WSA was delighted to be featured in the American Association of
Cancer Research 2014 National Cancer Progress Report. We were honored in
Washington DC for our efforts.
But the greatest thrill of all was the realization that women survivors continue to be seen and
heard. Survivorship issues that plague women survivors are being voiced and awareness
of those issues is finding a place in society.
Rewording our credo to read “… because cancer doesn’t end when treatment does,” reflects
the continuing conversations between survivors. We believe that movements begin with the
action of a few empowered individuals who feel they have something to contribute. That continues to mirror the work of the WSA and the women we serve. The WSA is now a true voice of
survivors and we will continue to be a voice from now until there are no survivors because there
is no longer a disease we call cancer.
Many thanks to all those who continue to make the WSA a priority in their lives. Special thanks
to all the family and friends who believed in a dream six years ago and stood by us while
we navigated and grew to where we all are today.
For those who are just learning about us through this report, I personally invite you to join our
movement and witness the beauty of the 8 million American women cancer survivors of ALL
cancers as they transform society through the Women Survivors Alliance. Welcome to SURVIVORville, everyone!
Regards,
Karen Shayne and Judy Pearson
Co-Founders, Women Survivors Alliance
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2013 ACCOMPLISHMENTS
TABLE OF CONTENTS
A NOTE FROM THE CO-FOUNDERS
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WHY PURPLE?
3
THE FACTS ABOUT PURPLE
4
OUR STORY
5
CURRENT WSA PROGRAMS
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CURRENT MARKET/OUTREACH
7
COMMUNITY IMPACT
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SIGNATURE AWARENESS PROGRAMS
9
WSA: WHAT SURVIVORS ARE SAYING
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CONTRIBUTING INDIVIDUALS AND ORGANIZATIONS
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2013/14 BOARD OF DIRECTORS/NATIONAL ADVISORY COUNCIL
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WHY PURPLE?
Purple … it’s the color of violets and plums. It’s also the color of survivorship. Just as each cancer has a signature ribbon, purple represents
the survivorship of all cancers. An individual becomes a survivor at the
time of diagnosis. It’s at that very moment in time they begin to survive
cancer. The work of the Women Survivors Alliance, then, is to support
all women on the survivor spectrum. Our mission is clear: to establish
a network where women affected by cancer can find their voice, improve their quality of life, and embrace their new normal.
Cancer has been the great unifier for those of us who have traveled
the journey. Race, religion and sexual orientation don’t matter to this
menace – it’s an equal opportunity killer. But whether newly diagnosed
or many years from that date in our personal history, we are connected
by the fact that we faced the beast. Most amazing of all is that cancer’s
very deadliness gives us power we never expected.
That collective power in turn gives us the strength to help those behind
us in their fight. It enables us to guide the scientific and medical communities worldwide in the quest to treat and cure the disease.
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THE FACTS ABOUT PURPLE
•An individual becomes a cancer survivor from the moment of
diagnosis.
•Thanks to medical advances, more and more of us are surviving
through treatment and beyond. But a cancer diagnosis is a life
game changer, as survivors must address the long-term and life
limiting effects of those treatments including physical, psychosocial, legal and financial issues and more.
•The Commission on Cancer has issued a mandate that all of its
1,500 accredited cancer treatment facilities MUST HAVE survivor
programs in practice by the end of 2014.
•The Women Survivors Alliance (WSA) was created to support
the 7 million women survivors, their families, and by extension,
society as a whole, by addressing these burdens through education, motivation and life application. We support ALL cancers, ALL
stages, ALL ages, ALL women.
•This loyal and connected demographic has never been recognized as such and therefore has never been approached from a
marketing standpoint.
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WSA: OUR STORY
In true Nashville form, the WSA was created around a table in a downtown venue where the sounds of banjo and a steel guitar drowned
out the hustle and bustle of Lower Broadway. With an idea on a napkin in the left hand and red lipstick in the right, the words “Survivors
Convention” were written on a bathroom mirror and that’s where it began. That was five years ago.
From 2008-2010, practicing healthcare administrator Karen Shayne conducted research as to what was needed specifically for women
survivors. What was missing? With a healthcare background AND the opportunity to sit on both sides of the desk as an administrator
and a survivor, Karen began to ask those direct questions. Cancer research saved lives, but then what? What happens when you are
unplugged from the last chemo treatment, given the cupcake and sent home? What happens in those quiet moments of a still house
when you are faced with the questions, “Who am I? What does that mean?” “Will I ever feel 'normal' again?”
Karen faced those very same questions herself as a survivor. Several years later, faced with those convictions and also beginning to
suffer the after effects of treatment, Karen wanted to reach out to other women to ask the question as to why they were not satisfied
with their after-treatment follow-up. Although there were opportunities for discovering answers through many convention-type settings
and the growing survivorship clinics within the hospital setting, she wondered why were there still so many questions.
Karen began to realize women need a different type of setting—an outlet of some kind—where networking and emotionally connecting
with other women facing the same issues could be the focus; a place where any type of question could be asked and where even a
simple hug from a fellow woman survivor could answer the most burning question of all: ”Am I normal?” Karen also realized there was
no one organization that was all about all women, all cancers, all stages and all ages.
In 2011, the paperwork began on a new 501c(3) that focused on the first step of gathering women together from all over the country see
to officially “launch” this effort. Tennessee cancer organizations each joined in on the planning and over the course of six months ideas
were presented and committees formed. The venue would be in Nashville—Gaylord Opryland Hotel and Resort—as that was the home
of the newly-founded 501c(3) and the launch would be a full-scale national effort. It would take place in August of 2013. The charity's
name would be Women Survivors Conventions. A temporary Board of Directors was put in place and in April 2012, the 501c(3) was
granted and the non-profit was officially established in Tennessee.
Then, by chance, in July 2012, Karen received a phone call from Chicago resident Judy Pearson. Judy was two-years post cancer and
was in search of her own answers to similar questions regarding cancer treatment issues when she stumbled upon the upcoming convention. After several months of conversations, meetings and increased synergy between the two, Karen (now known as “Dolly”) invited
Judy (now known as EllyMae) to join the board and asked her to become a Co-Founder to help launch an even bigger movement and to
give the convention full-year longevity with additional services. Those services would be include an online magazine designed especially for women cancer survivors and small, one-day events in partnership with other cancer centers -- similar to the big yearly convention but on a more regional level. With those impending changes, in late 2012, the Women Survivors Conventions officially changed its
charter name to Women Survivors Alliance.
With a growing audience, Karen and Judy executed the official “launch” of the Women Survivors Alliance at Gaylord Opryland Resort in August
2013. SURVIVORville 2013 saw an attendance of 49 states and five countries. During the launch, the WSA introduced NOU Magazine (http://
www.noumagazine.org), the nation’s only women survivors digital magazine. In Summer of 2014, and as an expansion of the tradition of My 2nd
Act essays at SURVIVORville 2013, the WSA launched My 2nd Act: Survivor Stories from the Stage – a live stage show showcasing local
women survivors who have created a 2nd Act of life in their survivorship.
With four websites, two national (turned international) convention under their belt and a plethora of women survivors fans from across
the world, the Women Survivors Alliance has officially launched and the steady growth of programs and national awareness campaigns
have begun—all with the goal of truly “Transforming Survivorship from a MOOD to a MOVEMENT!”
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CURRENT WSA PROGRAMS
The Women Survivors Alliance has undertaken a national call to action to address the burdens of survivorship issues on women, their
families, and by extension, society as a whole. It is 501(c)3 organization created BY women survivors FOR women survivors. The
alliance serves all women, all ages, all stages and all cancers. Currently the WSA provides THREE RIBBONS OF SUPPORT.
SURVIVORville
The First Ribbon of support is SURVIVORville (formerly known as National Women Survivors Convention). Held in Nashville, this event brings together women survivors of all ages,
all stages and all cancers. Education, motivation and life application are the focus, with
celebrities, medical experts from all areas of survivorship, the Celebrate Survivors 5K and
Walk, and more. Over 2000 attendees have participated in the event over the last two
years.
NOU Online Magazine
The Second Ribbon of support is the WSA digital magazine NOU Magazine, for women survivors living a NOU (New+You) life
(www.noumagazine.org). A comprehensive resource, its dynamic content includes articles on nutrition, exercise, finances, sexuality,
health, a book club, a directory of cancer and survivorship organizations across the internet, and more.
The Third Ribbon is our stage show (www.SurvivorsSecondAct.com) We believe
helping is healing, and encourage women to tell their stories – either written or read
before an audience – of using their gifts of time and experience to help other women
on their cancer journeys. So we created My 2nd Act, a ever-growing collection of survivor essays, and My 2nd Act: Survivor Stories from the Stage, a professionally produced stage featuring 12 women each reading their 5 minute stories. The result of
both of these platforms is celebratory, inspiring, and empowering for all.
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IN 2013 WSA WAS FEATURED IN...
CURRENT WSA MARKET
There are 7 million women cancer survivors in the United States. That’s a
number greater than the populations of Norway, New Zealand or Denmark.
Because of advances in research, treatment and early detection, that number is estimated to rise to 9 million by 2022.
Like all women, cancer survivors lead multi-faceted lives as wives, partners,
mothers, daughters, employers, employees, and volunteers. And while
women survivors have all the same dreams and needs as other women,
they must also balance the game changing challenges a cancer diagnosis
presents. They face health and self image issues as a result of their treatments. They face financial, legal and insurance issues as a result of their
medical care. They wonder if the disease that nearly took their lives might
return.
Their disease sets them apart from others, but it also creates a sisterhood. It
is a loyal, little understood and untapped demographic. Until now.
The Women Survivors Alliance (WSA) has undertaken a national call to
action to address the needs of women cancer survivors across the US.
Their support offerings include a digital magazine, an annual national convention and one day programs conducted at cancer treatment centers
throughout the country.
WSA CURRENT MARKETING OUTREACH
Social Media - Facebook, Twitter, LinkedIn and whatever the future may
hold in social media will keep the WSA and its work top of mind.
Internet - As a 501c3, the WSA has been granted $10,000 per month in
Google Ads. These ads are used to promote our convention and the work
we do on our three websites:
www.womensurvivorsalliance.org - an overview of the “mothership” organization.
www.noumagazine.org - NOU Magazine women survivors living a NOU
(New+You) life, our digital magazine and community.
www.SURVIVORville.com - featuring an album of previous conventions
and the registration point for future events.
Publicity - We provide our national calibre publicist a plethora of news worthy announcements to work with. And she makes magic happen.
Partner Organizations - The WSA has partnered with organizations, medical facilities and corporations on multiple levels. A vital part of those partnership agreements is the mutually beneficial cross promotion achieved.
Governor Bill Haslam proclaimed
“Women Survivors Week” in Tennessee
August 2013/2014 in honor of the WSA
Database - In addition to announcing weekly updates in NOU Magazine,
newsletters to our ever-growing database keeps readers up to date on the
next convention and WSA events.
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why survivorship is a movement whose time has come.
COMMUNITY IMPACT
As survivorship numbers continue to grow, so do the efforts of the WSA...
CURRENT WSA NUMBERS
7,000,000 number of women cancer survivors in the United States
800,000 projected number of new cancer diagnoses in women
and new survivors for 2014
1762
number of 2013/2014—National Women Survivors Convent
ion attendees
90
per cent of attendees said they will return to the convention
1200 projected number of 2015 convention attendees
49
number of states represented at the convention
136
national cancer organizations represented at the convention
27
types of cancers represented at the convention
5
number of countries represented at the convention
67
numbers of expert presenters represented at the convention
24
scientific sessions represented at the convention
COMMUNITY IMPACT 2014/2015
As medical advancements are saving more lives, survivor numbers continue to increase. In 2013, 800,000 women will be diagnosed
with cancer, the point at which they become survivors. They will join the more than 7,000,000 currently in the United States. One in
three women will be diagnosed with cancer in their lifetime. Each of them is supported by a circle of co-survivors. Bottom line, those
numbers translate into nearly EVERY family in America being touched by this dreadful and life altering disease in some way.
Insomuch as Nashville is a health care mecca, there’s truly no better, or more centrally located, city to transform into SURVIVORville.
The continuing support and cooperation of Gaylord Entertainment (through the Grand Ole Opry) and Marriott International have already helped pave the way for this transformation.
In 2015, the 3rd annual National Women’s Survivors Convention (now known as SURVIVORville) will again be held at Gaylord Opryland Resort, June 4 - 7. This coincides with National Survivors Day (always the first Sunday of June), which is a nationally proclaimed
celebration of survivorship. On that day, SURVIVORville will culminate
with its annual 5K, proposed to be run through downtown Nashville. This
race will not only include convention attendees, but will be marketed to
racers around the world. The race will finish with a festival atmosphere
and a fund-raising concert at a local entertainment venue.
Beginning January 1, 2014, we will market Nashville, TN, as the international destination for women survivors and their co-survivors. In other
words, one day each year, Nashville truly becomes SURVIVORville, in
support of the Nashville-based Women Survivors Alliance.
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SIGNATURE AWARENESS PROGRAMS/EVENTS
Celebrate Survivors 5k Walk/Run
The Celebrate Survivors 5K is our a signature walk/race event which occurs
each year in selected towns around the country. Our hometown race, located
in Nashville, is held during SURVIVORville each year.
This event involves not just the survivors, but their families and friends as a
means of not just celebrating their live, but also provides a giving back opportunity. For the survivor, it is about celebrating their life accomplishments, whether
it be completing treatment or honoring the family members of those who have stood by them during their diagnosis. Many organizations and individuals form teams and raise money for the Women Survivors Alliance. 100% of the race funds are applied directly to the WSA educational programs.
It is the goal of the WSA to show every step a walker or runner takes is one step toward truly transforming survivorship from MOOD to a MOVEMENT by empowering, education and motivating and connecting women whose lives have been touched by cancer.
Women heal through community. We also heal through nurturing others. My 2nd Act: Survivor Stories from the Stage provides proof
that a life-changing event like a cancer diagnosis doesn’t have to
mean life no longer has value. Quite the contrary! The women survivors featured in each production have changed the lives of others with
their 2nd Acts.
Live story telling as a form of education has existed for millennia. Prophets, troubadours, chanters, and more told stories to inspire and teach its
listeners. Each time a story was retold, it inspired and taught others, from individuals to generations.
My 2nd Act is exactly that and has the same kind of exponential growth. Women survivors reading their stories of their 2nd Act after a cancer
diagnosis, and how they’re using their gifts of time and experience to help better society. The members of the audience are, in turn, inspired to
create their own 2nd Acts, which in turn inspire others. And so on, and so on.
My 2nd Act: Survivor Stories from the Stage is not only a production to teach and inspire its audience. If cancer was cured tomorrow, more than
600,000 women would be spared a diagnosis in the next year. But America’s 7.5 million women cancer survivors would still face myriad long-term
and life-limiting issues from their diagnosis and treatment.
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why survivorship is a movement whose time has come.
WSA: WHAT SURVIVORS ARE SAYING
The words of the attendees of our 2013 inaugural National Women Survivors Convention tell the story of why survivorship
is a movement whose time has come.
What was your “Ah-ha!” moment?
✴ Where do I begin? This past week was the best week of my life, hands down! You have touched so many lives ... mine included ...
and I will forever be grateful!
✴ An amazing experience - I’ll be telling EVERYONE about this!
✴ I learned more about life after cancer in 2 1/2 days than the previous 7 years! Wow - thank you so much!
✴ We are all “Turtle Angels,” slow and steady, but press on - you are inspiring everyone around you!
✴ Cancer is just a word, not a sentence.
✴ What an awesome experience to give back by being a volunteer at this convention. So many blessings meeting many of these
wonderful survivors. I am grateful for all the new friendships!
✴ It was inspiring to see survivors come together for education, inspiration and fun!
✴ Simply being under one roof with over 800 women who understand what chemo brain has made the trip worthwhile. Getting to
meet extraordinary women who are the rockstars of survivorship and cancer research made this weekend unforgettable!
✴ Battling cancer is a war. It is so Inspiring to be in the midst of others … on the same battlefield ... who are swinging the sword
against the enemy - cancer. It gives me the strength to keep swinging my sword!
✴ The instant community.
✴ The makeover totally boosted my confidence!
✴ Hanging with other survivors was excellent! The 5k was very fun and inspiring!
What is the most important thing you’re taking home with you?
✴ Thank you for finally giving me a place that I feel a sense of belonging.
✴ Amazing weekend of fun, awesome seminars, laughter and hope!
✴ Bonding with other ‘sisters,’ my new family for life!
✴ My end of treatment celebration!
✴ Scott Hamilton and Shannon Miller - real people, real illness. We all feel fear!
✴ I was inspired by the testimonies of the others. To know others have gone down the exact same road I have and to hear how they
handled it was so eye-opening.
✴ Realizing nothing I am going through is abnormal. We all experience similar things. I loved the suggestions of how other survivors
are getting through their issues.
✴ This was awesome. I’ll definitely be back next year!
✴ I'm completely hopeful again.
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CONTRIBUTING INDIVIDUALS AND ORGANIZATIONS
We appreciate the many individuals and organizations who are contributing their support and
funding toward honoring SURVIVORS at the National Women’s Survivors Convention in 2013.
After Breast Cancer Diagnosis/ABCD
American Association of Cancer Research
American Cancer Society
American Cancer Society Cancer Action Network
Because Hope Matters Radio
Bravo TV’s Tabatha Coffey
Cancer and Careers
Cancer Support Community
Cancer Today Magazine
Cancer Treatment Centers of America
Center for Natural Breast Reconstruction
CHICO’s/White House Black Market
Coldwater Creek
Diana Jeffery/Center for Healthcare Management Studies,
Defense Health Cost Assessment and Program Evaluation,
DHCAPE, Office of the Chief Financial Officer, TRICARE
Management Activity, Military Health System, Assistant Secretary of Defense - Health Affairs, Department of Defense
Dr. Armin Weinberg, CEO Life Beyond Cancer/Life Beyond
Cancer Foundation
Dr. Otis Brawley, Chief Medical Officer of American Cancer
Society
Dr. Susan Love and Susan Love Research Foundation
Dr. Teresa Woodruff, Oncofertility Consortium at Northwestern University
Eucerin
Gaylord Entertainment
Genetech
George Washington University Office of Cancer Survivorship
Geralyn Lucas, author of Why I Wore Lipstick To My Mastectomy
Give Forward
Grand Ole Opry
Hope for Women Magazine
Kelly Cares Foundation
KISS USA
LIVESTRONG Foundation
LUNGevity
Martina McBride
Meals-To-Heal
Meharry Medical Collage
My Chemo Cocktail and Me
Nan Kelley, Great American Country Television
Nashville Convention and Visitors Bureau
National Consortium of Black Women in Ministry
Olympian Scott Hamilton
OPI
Ovarian Cancer National Alliance
Pearl Pointe
Ruth Bachman
St. Thomas Health
SonoCiné
Stupid Cancer
Survivor Glam Squad
Susan G. Komen Greater Nashville
Taussig Cancer Institute at Cleveland Clinic
TEAM Martina
Tennessee Cancer Coalition
Tennessee Oncology
The Little River Band
The Pink Choir
Triage Cancer
Vanderbilt Ingram Cancer Center
Walgreens
YMCA
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2014/15 BOARD OF DIRECTORS
The WSA Board of Directors is comprised of all volunteers who lead WSA in partnership with the National Advisory Council in program development and fundraising activities.
Karen Shayne
Chairman of the Board, Co-founder, Women Survivors Alliance, Cancer Survivor
Judy Pearson
Co-founder, Women Survivors Alliance, Cancer Survivor
Sherry Abbott
Executive Director, CCTFA Foundation, Cancer Survivor
David Bradley
Bradley Wealth Management/Wells Fargo Advisors, LLC
Chiqeeta Jameson
SonoCiné Director of Marketing, Director of Communications, Women’s Health Advocacy, Cancer Survivor
Becky Keck, E.D., MSN, NEA-BC
Senior Associate Dean, Administration & Operations, Chief Administrative Officer, Assistant Professor, Vanderbilt University
Diana Jeffrey PhD, Chairman
Director for the Center for Healthcare Management Studies/Defense Health Cost Assessment and Program Evaluation (DHCAPE)/
Office of the Chief Financial Officer/TRICARE Management Activity/Military Health System/Assistant Secretary of Defense – Health
Affairs – Department of Defense
2014/15 NATIONAL ADVISORY COUNCIL
Joanna Morales
CEO, Triage Cancer and Principal at North Star Alliances, Inc.
Teri Powell
Patient and Family Liaison, Vanderbilt University Medical Center, Cancer Survivor
Jera Williams
Young Adult Cancer Survivor
Christine Bishop
Cancer Survivor and Director of Events
Julie Adams
Director of Marketing for Cancer Treatment Centers of America
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