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June 17, 2010

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June 17, 2010

The Ovarian Cancer National Alliance is an organization close to my heart as I lost my Mother to Ovarian Cancer over 10 years ago. The events that the OCNA puts on are top notch and reach so many surviors and family members that have been affected by this disease. All the events I've been to since volunteering the past few years have always been a fun and positive experience. Every detail has been perfect and all the events have had incredible turnouts. It's really important to me to know that my help can make a difference in someone's life and I'm proud to help the OCNA in any way I can.

The Great!

I've personally experienced the results of this organization in...

watching the success of all their events that I have volunteered in. They always have a big turnout and everyone walks away from their event's with more knowledge regarding the disease and hearing the amazing stories of the survivors is a true insperation

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How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

May 19, 2010

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May 19, 2010

OCNA is a non-profit umbrella organization that brings together cancer activists, women's health advocates, health care providers and researchers in the battle against ovarian cancer. OCNA's website, www.ovariancancer.org, provides access to names of Gynecologic Oncologists, up-to-date diagnosis, treatment and information about genetic influences as well as breaking news in the ovarian cancer field. OCNA's goal is to improve the survival rate of women diagnosed with ovarian cancer. We work with health professionals in training (in Medical, Nursing, Midwifery, Physician Assistant Schools) what to look and listen for when working with women so they may be diagnosed early if they have symptoms of ovarian cancer. EARLY DIAGNOSIS MEANS INCREASED SURVIVAL TIME. OCNA's signature program, Survivors Teaching Students, works toward earlier diagnosis through survivors who tell their stories to students who are just beginning to work with Gynecology patients. Usually, three of us share our stories of diagnosis, treatment and our lives now. We hope to prevent the delays that lead to more than 81% of us being diagnosed late-stage and to encourage what we found was helpful. How to give bad news, ensure that hope survives and where to get help if needed are among the contents of these personal stories. We put a face to a dreaded disease. We show that while ovarian cancer is the most lethal of gynecologic cancers, there are survivors who continue their lives. Results of each panel's presentation are determined by two surveys filled out by students before and after they have heard the speakers. Group facilitators now enter data from each presentation online at OCNA's website. An Electronic Data System allows us to collect survey results and quantitatively evaluate the effectiveness of the presentations. OCNA stands alone in its Survivors Teaching Students signature program. A physician now working in a NYC Medical School recently told a 3rd year student that he himself had never forgotten the STS presentations he had participated in years ago. You won't, either, he told her. OCNA reaches out to the newly diagnosed and to those of us who have survived and want an effective way to help. OCNA is the prime resource for women like me and our families who are dealing with ovarian cancer.

The Great!

I've personally experienced the results of this organization in...

leading groups of survivors speaking to med school students. Presentations in which wonderful questions are asked reflect intellectual curiosity. Leaving a presentation with hugs and warm wishes speaks to the emotional power of the survivors' stories.

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

August 4, 2009

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August 4, 2009

The Ovarian Cancer National Alliance is a well-organized, effective, and much-needed organization, as evidenced by studies that show that the majority of women and half of all doctors are unaware of the symptoms of ovarian cancer. In addition, ovarian cancer has traditionally been a stepchild when it comes to funding for cancer research. OCNA, founded little more than a decade ago, has made great strides toward educating the public and medical professionals about ovarian cancer; informing women with ovarian cancer about all aspects of their disease, including resources; and uniting these women and giving them a voice at the state and national levels.

The Great!

I've personally experienced the results of this organization in...

the passage of Johanna's Law, national legislation that provides for educating the public and medical professionals about gynecological cancers.

Ways to make it better...

If I had to make changes to this organization, I would...

Find a way to involve more women living at a distance from Washington, DC, which is where the national conference takes place. This conference is so energizing, and I think it's the primary way the organization has of building investment in its programs.

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What I've enjoyed the most about my experience with this nonprofit is...

the opportunity to learn about cutting-edge ovarian cancer research, and the chance to meet and network with other women with ovarian cancer.

The kinds of staff and volunteers that I met were...

passionate in their desire to prevent women from dying of this disease.

If this organization had 10 million bucks, it could...

For one thing, it could offer regional conferences for women in far-flung states and could offer more scholarships to women who otherwise could not afford to attend.

Ways to make it better...

I had had more role-playing instruction about lobbying my legislators.

In my opinion, the biggest challenges facing this organization are...

1. The fact that the contributions of many volunteers will be disrupted by recurrent treatments and, all too often, death. 2. Competition for limited resources.

When was your last experience with this nonprofit?

2009

July 31, 2009

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July 31, 2009

I've been involved with the Ovarian Cancer National Alliance since it's first conference in 1998. The leadership training I received in the early years of the Alliance has helped me become a vocal advocate on a wide range of cancer issues. While the organization has grown in terms of the various activities it is involved in, the focus on women with ovarian cancer, their families and the future patients is kept in the forfront of the organization's aims.

The Great!

I've personally experienced the results of this organization in...

funding for Ovarian Cancer Research in the Federal Goverment's budget.

Ways to make it better...

If I had to make changes to this organization, I would...

Provide more leadership training seminars for members like I attended in the early days of the Alliance.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

Seeing the local groups affiliated with the group begin to grow and make a difference in their communities.

The kinds of staff and volunteers that I met were...

great. Very dedicated and very professional.

If this organization had 10 million bucks, it could...

educate the public and medical community about the signs, symptoms and the appropriate medical care women with ovarian cancer should get.

Ways to make it better...

so many women wouldn't have lost their lives to ovarian cancer over the last 11 years.

In my opinion, the biggest challenges facing this organization are...

Funding

One thing I'd also say is that...

I'm proud to be a member of the Alliance and look forward to the day when the disease is conquered so all of us can retire.

When was your last experience with this nonprofit?

2009

July 31, 2009

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July 31, 2009

Though I have not been personally touched by ovarian cancer, I have worked with the organization in a variety of fundraising and outreach capacities. The 12th Annual Ovarian Cancer National Alliance was an incredibly moving experience for me. The organization staff ran a tremendously informative and very special program. I was deeply touched by the stories from the many survivors whom I met and as a result, I have a renewed strength to continue to work with the organization.

The Great!

I've personally experienced the results of this organization in...

the faces of the survivors who have great hope and support because of this wonderful organization

Ways to make it better...

If I had to make changes to this organization, I would...

More feedback...

Ways to make it better...

More people knew how important this cause is.

One thing I'd also say is that...

I am so excited to continue to work with this organization and watch them as they conquer this disease.

When was your last experience with this nonprofit?

2009

July 28, 2009

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July 28, 2009

While researching to understand ovarian cancer after being diagnosed in early 2007, I discovered "Survivors Teaching Students: Saving Women's Lives," the ovarian cancer educatiion program for medical students under the sponsorship of OCNA. As I am a living example of two things that have become my passion: early detection of ovarian cancer and timely referral of patients into the care of a gynecologic oncologist, I will share my story whenever the opportunity presents itself: as a guest speaker, facilitator, or writer for community outreach efforts. OCNA continues to support my education and commitment with attending their annual conferences the last two years in Washington, DC.; participating in Lobbying Congress on the last day of the conference. As well, they nominated me to participate this year as a Consumer Reviewer of the Department of Defense Congressionlly Directed Medical Scientific Research Panel for FY09 ovarian cancer program.

The Great!

I've personally experienced the results of this organization in...

the eyes of third year medical students who listened and responded to our presentations at the medical school about the symptons and risk factors from personal experiences of ovarian cancer survivors.

Ways to make it better...

If I had to make changes to this organization, I would...

Raise funds to hire more part time and permanent staff members.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

Their support in any way I need to facilitate and expand our outreach program here in San Diego California.

The kinds of staff and volunteers that I met were...

Top notch, caring and highly motivated personnel.

If this organization had 10 million bucks, it could...

Change the face of ovarian cancer and affect the dollars we need for research to find the early detection screening test to save women's lives.

Ways to make it better...

If the days of the Conference in Washington DC were not so packed and long.

In my opinion, the biggest challenges facing this organization are...

Enough staff to support the indivduals expanding the Survivors Teaching Students Program. Standarizing the partner members under the umbrella of OCNA as each one seems to have their own name which is confusing as to the organization they belong.

When was your last experience with this nonprofit?

2009

July 27, 2009

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July 27, 2009

This organization has helped me immensely with information on ovarian cancer and becoming an advocate for the disease. I have attended 4 conferences held in Washington, DC and have gone to Capitol Hill on 2 of these occasions to speak with representatives regarding funding for ovarian cancer research and education. This organization also helped me become a member of the Survivors Teaching Students which enables us to go to medical schools and speak about our experiences with the disease to future doctors, nurses, and others in the health field. They also have an on-line support group that I am involved in daily to assist me and others with information and problems that come up with living with ovarian cancer.

The Great!

I've personally experienced the results of this organization in...

getting bills passed in congress and the senate and having the President sign them

Ways to make it better...

If I had to make changes to this organization, I would...

Have mini conferences during the year in different areas of the country.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

Meeting dedicated people to assist us and the group of women that are afflicted with this disease.

The kinds of staff and volunteers that I met were...

very helpful and always there with information for me

If this organization had 10 million bucks, it could...

Have it's own research grants

Ways to make it better...

I had been able to participate in the 2 other capitol hill days that I attended at the conference.

In my opinion, the biggest challenges facing this organization are...

Finances

One thing I'd also say is that...

I have been impressed with the kind of individuals working for this organization

When was your last experience with this nonprofit?

2009

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