Have you seen Chad’s great work in the year-end video? In case you missed it here is the video. Check back in tommorow for a post on the highlights of 2010.
httpv://www.youtube.com/watch?v=5XvPOaCrtXg
Remembering Months Gone By – A Video Review of Ovarian Cancer Awareness Month
As we look forward to the Holidays (can it really be Thanksgiving next week?!?), and then Cervical Cancer Awareness Month this next January, I wanted to take a look at the events of this last September – Ovarian Cancer Awareness Month. WORD had the distinct pleasure of being at ovarian cancer events in Cincinatti, Dayton, Toledo and Columbus, Ohio as well as events in Indianapolis and Noblesville, Indiana. As is our tradition, Chad did a great job putting some highlight videos together of the events. I realize it takes a few minutes of your day – but I think you will NOT be dissappointed seeing the excitiment garnered by these events. I encourage you share this post with a friend!
httpv://www.youtube.com/watch?v=veQ6yHhQrLI
httpv://www.youtube.com/watch?v=8Q_nCQB13nY
httpv://www.youtube.com/watch?v=UpE7ppm69ok
httpv://www.youtube.com/watch?v=4j1ADDv3kB8
httpv://www.youtube.com/watch?v=09sbzxVuPLc
httpv://www.youtube.com/watch?v=SUACMnVm63s
httpv://www.youtube.com/watch?v=NlNvOXADMqc
Simplicity. Clarity. Authenticity.
WORD was founded by physicians. Physicians can often jump into a language filled with English words that many of us have never heard. Our physicians are exhaustive in their research and passionate about their preparation. These traits make them excellent in the operating room and in the clinic. However, often when I sit down with our founders I can quickly get in over my head with the technical vocabulary, complex concepts and endless details. These are not bad conversations, and often lead to interesting conceptual breakthroughs. However, WORD was founded by these same people to be a sort of bridge between “eggheads and patients” In other words, we want to keep it simple, communicate clearly and produce authentic and accurate health information.
I recently read a blog post by Jamie H. Von Roenn, MD. that encapsulates much of what we feel about our new web site. In it she stated when describing conversations that can happen in a grocery store:
“I keep it simple, direct, and personal, rather than complex, oblique, or detailed. I leave the casual encounter feeling like it’s a nice connection.”
“Simple, direct and personal” is what WORD hopes to be. There is multitude of good health information on the Internet, We don’t want to be the most exhaustive or the most technical. Simply, we want to be the most clear and if you want to go further, then we want to be a springboard for you to other sites and information.
This is why we try to break our text, videos, blog posts, and even audio into quick, easy to understand basics – that will hopefully answer your basic questions very quickly and make it clear what else you need to know. Though we may never “finish” our website, I hope that we will always produce accurate healh information that is simple, clear and authentic.
If you have ideas when looking around on our site of ways we can be clear and simple let us know – leave a comment here or on Facebook, write us an email or give us a call.
Cervical cancer “CAN” be beaten. Cervical cancer “MUST” be beaten. Cervical cancer “WILL” be beaten.
I often hear the title phrase in my head when I break into my somewhat rehearsed, partially extemporaneous speech about the conquerable nature of cervical cancer because of its proven cause in the Human Papillomavirus (HPV). I am not totally sure when I started adding this particular set of phrases to my short speech about how we can work together to end cervical cancer in our time, but the phrases often come out when talking about the mission of WORD and our goal to conquer gynecologic cancers. I know that cervical cancer is both preventable (through the HPV vaccine and regular screening) and detectable (through pap tests).
When I came across a book entitled Love, Kristen and its connected organization The Kristen Eve Foundation, I was drawn to their tag line: “Educate. Vaccinate. Eradicate.” It wasn’t just because it all rhymes with my name Nate but because its essence rang true to how I often describe our efforts in regards to cervical cancer. We really do believe we can fully eradicate cervical cancer, with the current medical protocols, in this generation.
When I read about organizations that resonate with me – I always try to make contact with the organization to see if there is a partnership to be developed. As I often do – I found an email address and shot off an introductory note. Now, unfortunately, often these emails are not returned and require some sort of other follow-up. However, Kirk Forbes, the author of Love, Kristen and found of the Kristen Eve Foundation immediately responded. Now part of the uniqueness of this initial contact, is that we literally live about 10 miles apart from one another. We quickly setup a meeting in a local coffee shop to get to know one another.
Our first meeting was not all that long ago, but in this short time, I have come to respect Kirk Forbes for his passion and strength immensely. Kirk lost his daughter, Kristen, at age 24 to this dreaded disease. Kirk, at that time of his daughter’s death, knew very little about cervical cancer or HPV. Kirk and his wife as grieving parents set out to make sure that this would not happen other women or parents.
Kirk, through persistence and tenacity, has started to build a collaboration to launch a Cervical Cancer-Free Indiana initiative in January 2011. We are proud to officially be a partner with Kirk in this initiative and are looking for ways to use the resources already created as well as create new resources to support the Cervical Cancer-Free iniatative in Indiana and eventually in all 50 states. Thanks Kirk and family for allowing your grief to blossom into hope for others. We applaud you!
Look for more information about his CCFI and Kristen Eve Partnership in the weeks and months to come.
Learn more about Cervical Cancer
Learn more about Kristen Eve Foundation
Order Love, Kristen
Proud to Partner with Libby's Hope and Paul Cacciatore
I always want to be a learner. I have always been taught that you can not possibly know everything, there is always more to understand and more sources of information and knowledge to find. As I work with the team founding WORD, nearly every day, I spend a portion of my day reading feeds of information about gynecologic cancers. I literally have read thousands of websites which mention gynecologic cancer. Some time over the last few years, I am not sure when, I began to regularly read the commentary on an ovarian cancer education site at healthinfoispower.wordpress.com , created by Libby’s Hope. Soon I began to follow other feeds from this site, including following twitter posts that save me hours of research because the post already had all the newest information. I was amazed at the quality and amount of information that was chronicled by this site. I became an avid follower.
Early this year, WORD was making a business trip to Los Angeles to work on our “WORD on HPV” animation and new website. Before traveling, I remembered that the founder of Libby’s Hope, Paul Cacciatore, was listed to be from the Los Angeles area. When traveling from our homes in the Midwest to sunny California, I always try to fill every possible minute with meetings to make our time as profitable as possible (and I will be honest, we always try to see the ocean at least once as well). I sent an email to Mr. Cacciatore an email late January, 2010 to see if we might be able to meet him; he quickly and graciously accepted.
During that first meeting, I was deeply impressed that there was something very special about Paul. His passion, thoughtfulness, compassion and commitment shown through his story. I knew I wanted WORD to partner with Libby’s Hope. Here is Paul telling part of what I heard that day.
httpv://www.youtube.com/watch?v=x_Q41suPC1w
Over the last about ten months, WORD and LIbby’s Hope has continued to identify ways that the two organizations can work together. We are proud to announce that on WORD’s new website all of our ovarian cancer news is powered by Libby’s Hope. Libby’s Hope has already helped thousands of women and their friends and families as they battle ovarian cancer. WORD hopes to help Libby’s Hope empower even more.
httpv://www.youtube.com/watch?v=LA8wR98QY-A
As we have developed our partnership WORD continues to develop our “Macro” focus on the field of gynecologic oncology and the foundational information that every woman needs to know. Libby’s Hope takes the macro concepts that WORD may present and gives “micro” commentary and connects them with breaking news. Our dream is that WORD and Libby’s Hope will give women, families and caretakers basic knowledge, important insight into new research, awareness of new treatments and real understanding of the the holistic battle to defeat ovarian cancer.
In June, Paul described our partnership as we started to dream about how we could work together.
httpv://www.youtube.com/watch?v=0fW4vf3Zh5Y
I am so proud to partner with Paul and look forward to what will happen in the future. Currently WORD and Libby’s Hope are looking at further ways that we can collaborate to create more positive resources for those battling battling ovarian cancer.
On behalf of WORD, thank you Paul and Libby’s Hope for allowing your gifts to bless many!
Click Here to see more videos about Libby’s Hope
Click Here to see the current feed of stories from Libby’s Hope shown on WORD.
Click Here to visit Libby’s Hope
New Website. Same Mission
Today we launch a new website that we started working on over a year ago. We have learned a lot about how to put together a larger, customized and expandable website. We made a lot of mistakes along the way, but we are proud to be launching today. We will highlight several features of the new website on this blog over time, but we will start today by just being thankful (it is November anyway – the month of Thanksgiving) for all those who worked hard to bring this new site to fruition.
Chad Braham
Special Thanks to Chad Braham. Chad has been the project manager of this endeavor since we began it. Now, Chad is our media director, but his hands-on experience and training are in video, radio and tv production. But, when you work for a start up nonprofit, you wear multiple hats. Chad has labored over every page of this site, making sure all the links work, all the content is correct and training himself in the content management system that we are using. We are so thankful to have Chad’s talents and initiative in this project.
David Bossert
David Bossert. Now David was the producer and director of the “WORD on HPV” animated short film and you can read and listen more about him [here]. David and his company Madison Beach Production served as the art direction for the creation of the new website.
New Wave Entertainment
New Wave Entertainment, especially Rob and Gary. New Wave coordinated the coding of the website. Thanks Rob and Gary.
Publicis
Special thanks to Kara and team at Publicis who oversaw the initial art direction, imaging and copy editing. Publicis made sure that thousands of words flowed and communicated in the best way.
Now today we officially launch the new site. We hope that it lays a foundation of years of effective web communication about gynecologic cancers and women’s health. We hope you will continue to support WORD as we create new resources and catalyze new research to help save women’s lives.
Why my family history is so important!
I was in the kitchen at a dinner following the memorial service of a family member. I know, not a great way to start any story, but as with most family events of this nature you get into conversations with friends and family that you have not seen in a long time. On this particularly Tuesday night the conversation went somewhat normally for me (I work in a unique field.)
“So Nate, what are you up to these days?”
“Well I am still working with WORD trying to help women know more about ovarian, cervical and uterine cancers and . . .” I am not able to finish my usual pitch because my friend immediately says, “My Mom has ovarian cancer. . .” This also happens all too often.
Then the conversation becomes really important. I have these type of conversations very often. The facts: many women are fighting cancer, many women’s moms and sisters are fighting cancer. Mom might be in active treatment for ovarian cancer, her sister may have had breast cancer, maybe her mother’s sister had breast cancer. These cancers affect all of us. On this particular night I hear the facts, and I take a big gulp and ask the question “Has anyone had genetic testing?” The stare I get when I ask this question often comes back at me blank . . . (insert chirping crickets here).
I hate that there are women and their families battling these cancers, and no health professional have even considered just mentioning that these are hereditary cancers. They have never heard of BRCA 1 or BRCA 2. We should all know at least the following:
When should you discuss hereditary cancer concerns?
- Breast cancer before age 50
- Ovarian cancer at any age
- Two primary breast cancers in an individual
- Both breast and ovarian cancer in an individual
- Male breast cancer at any age
- Two or more breast cancers in a family, one under age 50
- Women of Ashkenazi Jewish descent with breast or ovarian cancer at any age
- A previously identified BRCA mutation in the family
If any of these are true – talk to your doctor.
Am I at risk?
Every woman is at risk of developing ovarian cancer, however all risk is very personal. There are many factors which affect a person’s risk, including gender, age, family history, history of hormone exposure, and others. Let’s be clear, the majority of cancers don’t have a known hereditary component. However, some believe that up to 1 of 5 ovarian cancers are genetically related.
Where can I learn more?
I am very thankful for organizations like FORCE (check out their new site) and their work to educate women about their choices in regards to BRCA 1 and BRCA 2. I encourage you to check out their site or ask a question here and well try to find an answer. This past week JAMA published a new, extensive study following nearly 2,500 women with the genetic mutations, BRCA 1 and BRCA 2, at 22 cancer centers. Normal BRCA genes are tumor suppressors, killing cells that try to form cancer tumors. But, in some families, a mutation of the BRCA 1 or BRCA 2 gene obstructs this suppressor function, dramatically increasing a woman’s risk of getting the diseases.
According to Dr. Timothy Rebbeck of the University of Pennsylvania School of Medicine, “our findings show that women who choose to have these surgeries will reduce their risk of dying of breast or ovarian cancer by about 70 to 80 percent. There really isn’t anything else that can reduce a woman’s risk by this much.”
Watch a video here from JAMA.
Lastly let me encourage readers to support FORCE’s campaign. In their own words, ”The focal point of our campaign is the declaration of September 27th- October 4, 2010, as HBOC Week and September 30 as Previvor Day.” We will celebrate these dates as we look to take an honest look at family history, ovarian and breast cancer
Coming the Evening of September 25 to Noblesville, Indiana
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.
httpv://www.youtube.com/watch?v=U_lz-pTnkos
httpv://www.youtube.com/watch?v=Li9epjCx_OQ
httpv://www.youtube.com/watch?v=lG_VbiJSpJg
WORDs of Wisdom – OCAM Day 4
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.
httpv://www.youtube.com/watch?v=sMhOqNPEdDs
httpv://www.youtube.com/watch?v=NAIXsMJQKFo
