Coming the Evening of September 25 to Noblesville, Indiana

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What is Jane’s Mission?

It’s an effort that Jane and I began work on a long time ago, however, it turned into what it is today after her passing. Jane and I began meeting with Nate Manahan to try and figure out what we could do to further the efforts to educate women about ovarian cancer. When Jane passed, I founded this organization to further women’s education of ovarian cancer and in Jane’s memory. On the Web site, janesmission.com, those interested can read her columns, info about her faith, and a depiction of her journey with the disease. Jane’s Mission was also created to possibly generate donations to further educate women on ovarian cancer.

Tell me a little bit about yourself.

I’m an insurance claim adjuster, however, that’s my job not what I do. Jane and I were married for 11 years on June 1st and she passed just two days shy of that anniversary. I celebrate her re-birthday every year since her death, two years ago; I paint a painting for her. Before Jane died, she told me she wanted me to go out and date and fall in love again after she was gone; she wanted me to be happy again. Eventually, I’ve gotten to the point where I can. I will always love her and Jane’s mission is something I had to do for her out of that love..

Why art?

I chose art in part because I am an artist and from what I’ve learned, that tends to set us apart in the arena of fundraising efforts. There are other groups that do run/walks…something more traditional, however from what I have learned, the art aspect is really quite unique to us. It is a visual drawing point…no matter what the subject. I would like to try to put together a small booklet full of some of Jane’s writings to hand out to those who attend the fundraisers and someday maybe get some of them published.

What else do you have planned?

Well, in September of 09 we held our first Silent Auction. The theme had to do with art and creative writing…Jane being a writer and I am an artist. A good amount of the donations came from the art community I am associated with. It ended up being a social event, held in a coffee shop off the square. It was well attended and we ended up raising around $6,000, which was outstanding to us.

Our second event will again be in September of this year in Noblesville. Yes, we will try to push another silent auction. We have new members in the group that have new fresh ideas so we are looking at new possibilities. For this auction though, we are encouraging people to donate items that would appeal to a wider audience than just those that appreciate art.

What are your long term goals for the organization? Where do you see this company in the future?

My motto is dream big or go home. Right now we are operating under WORD, since they are the 501c3. I would love to see this be my full=-time job someday.  The end goal is to ultimately find a way to beat this cancer. This is my calling…I would rather be doing this eventually than a day job just to pay my bills.

WORDs of Wisdom – OCAM Day 4

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Yesterday we discussed our “Let’s Talk” personal history campaign. We believe that women will learn from other women about ovarian cancer. However, there are times that voice of experts is necessary and important. “WORDs of Wisdom” is a video series that features key voices from the field of medicine and research science to personally address questions and issues surrounding current gynecologic cancer trends.

In a recent research project WORD conducted with Regensteiff Center for Healthcare Engineering at Purdue University -- The date reported clearly confirmed that there were three trusted sources of healthcare information -- TV/Radio, physicians, and families. WORD is looking to be able to create digital media that will create accurate, empowering and clear content for all three of these sources. “Let’s talk” is an attempt to bring potential friends and family together to create dialogue through presentation of true media. “WORDs of Wisdom” is targeting at bring the expert into your home or place of business to give real, transparent advice about gynecologic cancer prevention, diagnosis, and treatment. Here are a few ovarian examples of WORDs of Wisdom videos.

The Faces of Ovarian Cancer – Day 3 – OCAM

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Ovarian Cancer is about women.  Ovarian Cancer is more than statistics, treatments and diagnoses.  We want to use the stories of the women affected by this disease to teach, encourage and give hope to others who will go through this disease.  Please watch the following movie about how your story could help others.

What is “Let’s Talk?”

“Let’s Talk” is a personal history campaign aimed at archiving the stories of women who have battled gynecologic cancer, and those who support them.  The best way to teach, to inspire, and to give hope is through the stories of those who live with, through, and beyond cancer.  Join in as others talk about their experiances with treatment, share about challenges, and celebrate victories… ”Let’s Talk!”

How will these video be used?

The purpose of these stories is to act as a person-to-person resource for others who wish to learn from other personal cancer experiences.  These 2-3 minute stories will be available for public access onwww.youtube.com/wordoncancer and certain DVD mailings done by WORD.  WORD does reserve the right to not use or remove interview pieces from this project, but our goal is to use as many stories as possible.

Where can I see more of these stories?

Our goal is to publish as many edited stories as possible at www.youtube.com/wordoncancer, so check regularly to see when new ones are uploaded.

How can I help?

WORD is available at certain events to record these interviews, check our blog to see where we may be heading next.  if you have several who might be interested in being recorded or you live in Ohio or Indiana contact us thorugh email (talk@wordoncancer.org) to setup a time that we can record your story.

Can I get a copy of these videos?

If you would like to requested a DVD version of these pieces, please email (talk@wordoncancer.org) and let us know.

Some other examples:

WORD on HPV

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This past week, when reading a mail-delivered local newspaper, my wife saw a headline that she knew would interest me.  It said, “Before Vaccinating daughter for HPV, consider the facts.” (click here to download a .pdf version, page 21 is the article) Well I certainly agree with that headline.  Unfortunately, over the next few sentences and paragraphs I was discouraged to read several false statements, I felt I needed to write some sort of response..  Here is what I wrote in response.

______

As executive director of Women’s Oncology Research & Dialogue (WORD), a Central Indiana-based gynecologic cancer research and education organization, I would like to respond to the article by Carol Rossetti, N.D. in the August 17, 2010 edition of Current in Carmel about the HPV vaccine.

First, I agree on many points in the article.

1.  The administration of the HPV vaccine is an important decision of each girl, young woman, parent and mentor.  The decision should be made jointly, considering all facts.  A completely informed decision is critical to the success of our current and future health care system.

2.  The HPV vaccines are relatively new vaccines (first approved 2006), and there is always much to be learned.  It is only through the continual scrutiny and analysis of the worldwide distribution of these vaccines that the goal of the eradication of cervical cancer is a reality.

Due to the necessary brevity of this reply – let me present you with a few fast facts about HPV and cervical cancer and refer you to hpv.wordoncancer.org to find a listing of resources (both pro and con) for learning more about HPV, the HPV vaccine and cervical cancer.

Fast Facts:

1. HPV, the Human Papillomavirus, can cause cervical, among other cancers, and is a common virus that can be passed from one person to another during sexual activity. Early vaccination is one measure to help prevent HPV.  Up to 80% of sexually active women are infected with HPV at some point during their life.[1]

2. Cervical Cancer affects over 11,000 women in the United States and is the leading female cancer killer among women in many developing countries.(cite)[2]

3. Vaccination against HPV is recommended by the American Academy of Pediatrics, the Centers for Disease Control and Prevention, the American Academy of Family Physicians and the American College of Obstetricians and Gynecologists. We now know that the currently approved vaccines, coupled with following annual exam and pap test recommendations along with appropriate physician action can and will prevent nearly all deaths and ultimately occurrences of cervical cancer.  (cite)

3. The vaccine has been tested and continues to be monitored to be safe.  As with any new medicine, information is constantly being monitored.  The vaccine prevents only certain strains, particularly focusing on the the two “high-risk” strains 16 and 18, which are known to cause over seventy-percent of cervical cancer cases.   In 2009, after three years of reporting, there were 32 deaths “potentially” linked to the HPV vaccine[3]; nationwide, 4,210 women died from complications from cervical cancer last year, and 12,200 were newly diagnosed.[4] This does not include the amount of women who had pre-cancerous lesions removed, which were found during pap screening, nor the amount of women who are affected by the cancer due to inadequate health care.

4. There are currently two vaccines to prevent HPV infection (Gardasil and Cervarix). Both vaccines are created from inactive forms of the virus, so there are no risks of contracting HPV from the vaccine.  These vaccines are currently recommended for girls and young women ages 9-16 and have been approved for the prevention of HPV in boys and young men.

5. I was unable to locate an article from the “Journal of the American Medical Association” cited by Ms. Rossetti in which she states “the death rate for cervical cancer is on par with the death rates from Gardasil.” The most relevant JAMA articles that I could find were a series of letter and articles run in the August 19, 2009 JAMA (http://jama.ama-assn.org/content/vol302/issue7/index.dtl).  This edition included an article by   Drs. Shelia and David Rothman, PhD on the marketing of HPV vaccine.  Part of their conclusion stated, “the new vaccine against 4 types of HPV … appears to be a cost-effective intervention with the potential to enhance both adolescent health and the quality of their adult lives.”

In conclusion, WORD, clearly advocates for an informed consent in regards to the HPV vaccine and all other medical care decisions. Speak with your doctor, read the documentation and seek out wise counsel. Our hope is that girls, women, parents, mentors and advocates will learn more so they can practice informed proactive health decisions.

A complete list of references, including footnoted mater can be found at hpv.wordoncancer.org


[1]Dunne EF, Unger ER, Sternberg M, et al. Prevalence of HPV infection among females in the United States. JAMA. 2007;297(8):813-819.

[2]http://www.cancer.org/Cancer/CervicalCancer/DetailedGuide/cervical-cancer-key-statistics (accessed August 18, 2010)

[3]Adverse Events and Quadrivalent Human Papillomavirus Recombinant Vaccine—Reply

John Iskander, Claudia Vellozzi, and Barbara A. Slade

JAMA. 2009;302(24):2657-2658.

[4]http://www.cancer.org/Cancer/CervicalCancer/DetailedGuide/cervical-cancer-key-statistics (accessed August 18, 2010)

WORD’s new website (coming soon)!

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If you are interested in helping “test” the new wordoncancer.org email Chad Braham at chad (at) wordoncancer (dot) org. We are looking for just a few people to “test” the site and give us their suggestions as we move forward with this website.

“WORD on HPV – Behind The Scenes” Video Episode 2

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As promised… here is the second Video Episode of “WORD on HPV – Behind The Scenes”.

In this episode, we walk you through a “making-of” the “WORD on HPV” educational animated short story. First, we show you a quick step-by-step of the animation process.  And secondly, we briefly explain the goals of the “WORD on HPV” project.

The “WORD on HPV” is an animated short story recently produced by WORD, with the goal of raising awareness of HPV infection and prevention, and it’s connection to cervical cancer.
To find out when the full 4min version of the animated story is released, be sure to subscribe to WORD’s eNewsletter at WORDonCancer.org

“What’s The WORD” Audio Podcast – David Bossert Interview

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David Bossert

Meet David Bossert…
In this audio podcast, we have a phone interview with the Producer and Director of the “WORD on HPV” educational animated short – David Bossert.

Be sure to subscribe to our eNewsletter, to learn more about the “WORD on HPV” project, and when you can see the animated piece in it’s entirety.
WhatsTheWORD Podcast Bossert Interview 0710 by wordoncancer

“The WORD on HPV” Credits:

A MADISON BEACH PRODUCION

Produced & Directed by

David Bossert

Written by:

Doug Segal

Music Composed & Conducted by:

Mark Watters

Production Services

Provided By:

DUCK Studios

Executive Producer: Mark Medernach

Producer: Daniel Ridgers

Editor: Hoa Mai

Animation Directors:

Phil Nibbelink & Andrew Austin

VOICE TALENT:

TONYA:                MALANIE:

Tempest Bledsoe Giselle Anthony

ASHLEY:

Kat Cressida

wordoncancer.org

Executive Producers:

Nathan Manahan & Chad Braham

© Women’s Oncology Research & Dialogue

Teal is Power 2010

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We were very pleased to take Kolleen’s Kards and WORD information to Ovarian Cancer National Alliance’s national conference.  Though were were not able to break away from our booth to take that many pictures, we did get a few pictures that we put together in the below video.

Quick pan of the room we are in shot on our phone

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Download now or watch on posterous

Ocna pan.3GP (965 KB)

Sent from my Verizon Wireless BlackBerry

Posted via email from wordoncancer’s posterous

Interview with Bill Stacey about Kolleen’s Kards

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Bill Answering questions at a recent video interview

What are Kolleen’s Kards?

The cards are paintings that Kolleen created during her fight with cancer. She used them to tell women about ovarian cancer. She put the artwork on bookmarks and postcards, etc. and then put information about ovarian cancer on the back of everyone. Kolleen wanted to tell as many women as she possibly could.

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