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Advocacy in Action – Ryan’s Story

By September 20, 2022No Comments

As we acknowledge National Ovarian Cancer Awareness Month throughout September, we are sharing stories of advocates who are using their passion and skills in unique ways to raise awareness of ovarian cancer. NOCC sat down with Ryan Walton, the son of an ovarian cancer survivor, who uses his skills in public speaking to share his unique perspective and connection to the cause.

National Ovarian Cancer Coalition (NOCC): Why did you get involved with ovarian cancer advocacy?

Ryan Mitstifer Walton (RMW): I got involved with ovarian cancer advocacy because I know how lucky I am to have a mom to come home to every day. Ever since birth, I’ve been involved in ovarian cancer awareness but come the age of 13, I wanted to take a bigger role. Since birth, I was by my mom’s side as she shared her story, and I eventually thought I should share our story from a son’s point of view. I saw the electricity in people’s eyes that I could create talking about ovaries as a teenage boy, and wanted to help bring awareness to this silent disease. More awareness equals more lives saved.  I want every teen to grow up with a mom, just like I have. As I made ovarian cancer awareness a personal platform and traveled all over the US sharing our story, I found myself drawn to focusing on ovarian cancer in an academic way.  I applied and was selected for an amazing internship opportunity at the University of Arizona the summer before my high school senior year. I was afforded the opportunity to work in Dr. Jennifer Barton’s research laboratories at The University of Arizona’s Bio5 Institute. That summer solidified my passion for biomedical engineering.  As a freshman at the University of Arizona, I knew I wanted to work with her team again.  As I begin my sophomore year, and over the past 2 years, I have seen and been working hands-on with technological advancements that will hopefully bring easier, faster, and more reliable diagnosis to this disease.

 

NOCC:  How did your unique brand of advocacy come about?

RMW: I would have to say my unique brand of advocacy came about even before I could breathe. My mom was 30 years old and experienced infertility for years.  During an infertility procedure, a mass was found and required removal.  My mom waited a month, but surgery was required and during her pre-operative procedures, found out she was naturally pregnant….with me. My journey continued after my mom’s healing in a stroller. From run walks to any small event where my mom could share her own journey, I started learning about advocacy. After the stroller, I was able to volunteer myself and enjoyed helping behind the scenes at these events. The connections I made and stories I heard are what shape me today. Once I realized I could make a bigger impact by using my own voice, I did just that as the opening speaker at the national ovarian cancer coalition national conference in New York City at the age of 14. Talk about a big debut. From then on, I have been coast to coast sharing our story and bringing awareness to anyone I meet.

 

 

NOCC: What advice would you give to someone who is interested in spreading awareness in their community but may not know where to start?

RMW: I would tell them – raise your voice because we NEED YOU!  It only takes 1 voice to break the silence, and the ripple effect can save more lives. It doesn’t take a stage or a microphone. It simply takes making one new friend a day and or educating one more person than yesterday. Awareness comes in many shapes, sizes, and forms. We need everyone’s voice.  It’s our only tool right now – and future OVARIES are depending on us.

Ryan Mitstifer Walton

As a long-time member of NOCC, Ryan has been advocating for ovarian cancer since birth. Ryan’s mother, Meredith, was diagnosed with ovarian cancer while pregnant with Ryan. Their incredible story of strength inspired Ryan to be a passionate advocate for the ovarian cancer community at a young age. Now, as a young adult, Ryan is studying at the University of Arizona to work in the field of biomedical engineering, where he hopes to make an impact in ovarian cancer screening and prevention using health technology.

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Stages of Ovarian Cancer

Before ovarian cancer - healthy ovaries

Stage 1 - Cancer is confined to one or both ovaries

Stage 2 - Cancer spreads within the pelvic region

Stage 3 - Average stage of diagnoses is stage 3C; cancer spreads to other body parts within the abdomen

Stage 4 - Cancer spreads beyond the abdomen to other body parts

 

National Ovarian Cancer Coalition

Stages of Ovarian Cancer

Stage 1

The cancer is confined to the ovary or fallopian tube

1A - The cancer is confined to one ovary only

1B - The cancer is found on both ovaries

1C - One or both ovaries are found with cancer cells spilling out from the ovaries

1C1 - Accidental rupture of the capsule by the surgeon during surgery

1C2 - Rupture of the capsule occurred before surgery

1C3 - Cancer cells are found in the fluid of the pelvis/abdomen

Stage 2

Growth of the cancer involves one or both ovaries with pelvic extension

2A - Extension of cancer to fallopian tubes or uterus

2B - Extension of cancer to other pelvic organs

Stage 3

Growth of the cancer involves one or both ovaries, and the cancer has spread beyond the pelvis

3A - Microscopic cancer cells found in upper abdomen or lymph nodes

3B - Visible tumor found in upper abdomen less than 2cm in size

3C - Visible tumor found in upper abdomen greater than 2cm in size, including disease on the surface of liver or spleen

Stage 4

The cancer growth is widely spread throughout the body

4A - Cancer is found in the fluid around lung

4B - Cancer is found inside the lungs, liver or spleen

National Ovarian Cancer Coalition

National Ovarian Cancer Coalition

30 Years of Courage

1991   

NOCC begins as a grassroots organization founded by advocates and survivors in Boca Raton, Florida

 1995   

NOCC incorporates as the country’s first national organization providing awareness and education about ovarian cancer.

1996   

The first national ovarian cancer information hotline is established (1-888-OVARIAN), now averaging 10,000 calls each year.

1998   

NOCC proclaims a week in September “National Ovarian Cancer Week,” with a declaration from President Clinton. “Walk for a Whisper” 5K Walk/Run is initiated.

2000   

NOCC and the ovarian community proclaim September as “National Ovarian Cancer Awareness Month.”

2002

The organization produces television PSA about early detection and distributes to 30 states.

2003

Ovarian.org received the Oncolink.com Award from OncoLink, the first online cancer resource founded by University of Pennsylvania cancer specialists.

NOCC receives the National Points of Light award in celebration of the success and impact volunteers have made in their communities.

2004

NOCC launches “Body Image/Body Essence” art exhibit by sculptor John Magnan as a tribute to his wife’s journey with ovarian cancer.

2006

NOCC launches the “Break the Silence” national education campaign.

2007

The “Break the Silence” campaign reaches 100M impressions.

NOCC helps launch the first consensus on ovarian cancer symptoms.

2008

NOCC moves its principal place of operation and state of incorporation/registration from Boca Raton, Florida to Dallas, Texas.

NOCC advocates help to double Department of Defense funding for ovarian cancer research to $20M per year.

2009

“Newly Diagnosed Patient Kit” is launched. DVD resource is made available in Spanish and Mandarin; 450,000+ pieces of literature are distributed nationwide.

2010

The Faces of Hope® program and term “Run/Walk to Break the Silence on Ovarian Cancer” are initiated. 

Annual fundraising events are branded “Run/Walk to Break the Silence on Ovarian Cancer®.”

2011

NOCC partners with The Dr. Oz Show to create his Break the Silence on Ovarian Cancer® campaign.

Over 1200 newly diagnosed women receive NOCC’s TEAL PACKET®

The “Ann Schreiber Ovarian Cancer Research Training Program of Excellence: A study by Dr. Ruth Perets” is supported by NOCC with a $50,000 contribution.

2012

NOCC supports quality of life research with the GOG 0225, LIvES Study, which is ongoing and conducted by the University of Arizona Cancer Center.

2013

More than 4,000 Faces of Hope TEAL totes are distributed.

2014

More than 575,000 pieces of education and awareness literature are distributed nationally.

NOCC affirms its commitment to research with the newest  initiative, collaborating with Stand Up to Cancer, Ovarian Cancer National Alliance, and Ovarian Cancer Research Fund to support the “Ovarian Cancer Dream Team.”

NOCC is featured in the highly coveted showcase window at 10 Rockefeller Plaza in midtown Manhattan.

2016

NOCC reaches its milestone 25th anniversary.

NOCC becomes an official charity partner for the New York Marathon and launches its first platform for endurance enthusiasts across the U.S - Team Teal®.

2017

Rejuvenate, the first event of its kind, is introduced by NOCC for survivors as a retreat experience centered around the mind, body and spirit; it later expands to a national series.

Not Knowing is Killing Us is launched as a hard-hitting national awareness campaign. 

2018  

NOCC's signature Run/Walk Series is rebranded and Together in Teal® Ending Ovarian Cancer is brought to life in communities across the nation.  

2019

Team Teal®, NOCC's endurance platform, expands internationally with participants in Greece and Canada.  

Together in Teal® Ending Ovarian Cancer is hosted at New York City's Intrepid Sea, Air & Space Museum, a national historic landmark.

2020

In response to the pandemic, NOCC introduces programming offering relief to women and their caregivers including home meal delivery, Comfort for the Soul, and online professional counseling through Comfort the Mind.  

Teal Hearts Network, a series of regional survivor support groups, commences in a virtual setting.

Together in Teal(R) hosts its first virtual experience, No Boundaries, and unites participants in 50 states and 9 countries.  

Signs and Symptoms

Ovarian cancer signs and symptoms include:

  • Feeling the need to urinate urgently or often
  • Trouble eating or feeling full quickly
  • Pelvic or abdominal pain
  • Bloating
  • Back pain
  • Upset stomach or heartburn
  • Fatigue
  • Constipation or menstrual changes
  • Pain during sex