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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 30, 2009

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July 30, 2009

Nine years ago, I turned to the Ovarian Cancer National Alliance after losing a dear friend to ovarian cancer. I was interested in building an organization in my community to adavocate for ovarian cancer. The Ovarian Cancer National Alliance assisted me tremendously with this process. They have guided and supported my organization all along the way. It is a true privledge to work with the Alliance.

The Great!

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

making a difference in public policy.

Ways to make it better...

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

More feedback...

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

the support they give and the wonderful people who work so hard to help others!

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

extremely giving of their time and very knowledgable in their work.

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

fund more programs for ovarian cancer which is so desperatley needed.

Ways to make it better...

It could not have been better!!

When was your last experience with this nonprofit?

2009

July 30, 2009

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July 30, 2009

Seven years ago,the Ovarian Cancer National Alliance made it possible for me to transcend the label of "cancer patient" and become an advocate; it changed my life. I just attended my 8th annual OCNA conference---they keep getting better and better. OCNA is a leader in education, awareness, and advocacy in the area of ovarian cancer. I am proud to be a board member and the president of my local Ovarian Cancer Alliance of OR/SW Wa.

The Great!

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

the education of women and health care professionals as well as legislation regarding ovarian cancer

More feedback...

When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

This was my first OCNA conference and I was deeply impressed by the personal as well as the professional aspects of the program. The leading research was presented in a very focused manner. The tough issue of helath care reform was presented with clarity and directness. The emotional aspects of cancer surviorship were addressed and supported and nurtured. Every stage of the conference was first rate. It was a winner.

The Great!

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

Everything about the organiztion seems to be first rate.

Ways to make it better...

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

More feedback...

Ways to make it better...

there had been better climate control in the meeting rooms and better menus and snacks.

When was your last experience with this nonprofit?

2009

July 28, 2009

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July 28, 2009

If you have been touched by ovarian cancer, you must know OCNA. They are the clearinghouse for all information about the disease and new treatments. They are also the umbrella for local chapters that work on getting the word about about awareness and that raise money for research. But the most amazing program is Survivors Teaching Students. Ovarian cancer survivors go into medical school classrooms and describe their experiences so that the doctors, nurses and other medical professionals of the future will keep this disease in mind.

The Great!

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

the faces of the medical students we talk to.

More feedback...

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

participating in the Survivors Teaching Students program.

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

FABULOUS, WONDERFUL, ENERGETIC!!!

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

have a greater reach.

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

July 25, 2009

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July 25, 2009

How to tell my story -- from the depths of hell-Well let first start off with the diagnosis process for ovarian cancer symptoms or shoud I say the lack of disagnosis of the symptons. My first encounter occurred when the symptons of ovarian cancer started screaming in July of 07. I went to my GP because I felt bloated and my pants were getting tighter around my stomach. My GP said it was probably because I was going into menopause and she sent my on my way. So I didn't think much more about it and resigned myself to a larger size and that the bloating would eventually go away. Over the next two weeks, I needed to urinate frequently or it was more like the sensation of pressure and needing to urinate. So, I was seen by a nurse practitioner who told me it was probably a urinary tract infection and sent me on my with an antibiotic perscription. Two weeks passed by and I still did not get any relief from bladder pressure, plus now I was having trouble having a bowel movement. So again, I went to my GP, explaining my symptons and she prescribed a stool softner-Colace and Lactose-- and sent me on my way. Another week passed and I still had bowel movement problems, urinary pressure, and bloating. I went in to see my GP and finally, this time she performed a rectal pelvic exam and felt a large mass. She then scheduled a transvaginal ultra sound and blood work. I didn't know what to think and she didn't elaborate on what the possibilities of the mass meant. The transvaginal ultra sound revealed two large masses attached and covering over one the ovaries and my CA 125 read 191. I received a call from my GP the same day of my ultra sound and she said she wanted to see me the next day because the ultrasound looked "suspicious". This did not sound good to me. When I consulted with my GP, she said because my CA 125 was elvated and the masses looked "suspicious" she was referring me an on oncologist. That was the when I got a lump in my throat and felt scared for the first time during this whole ordeal. Oncologist meant cancer. When I went to see the surgeon gynooncologist, I took my sister and my niece because I wanted another set of ears to hear what was going to be said. The surgeon told me he was confident that the masses were beign because of my age--48 years old--and I was in good health. He didn't even want to suggest treatment options such as chemo because he didn't think it was necessary to go down that path. The masses turned out to be cancer--Stage IV ovarian cancer. The surgeon said he was sorry that it turn out to be cancer but he performed ultimal debulking and got rid every visible sign of cancer he could. The chemo would get any residual cancer including the mass on my liver. That's the first chapter of my story. As you can see the symptons were not silent--they were screaming yet I did not know anything about the symptons of ovarian cancer or I would have been more insistent on having my GP perform a rectal plevic exam from the beginning just to rule out cancer. But none of the medical professionals connected the dots until weeks had passed and the symptons became more acute. I don't know if it would have made any difference in the staging--I could have already been at stage IV. But, that's not the point--The point is educating women on the symptons and educating the GP's to first rule out ovarian cancer by performing at least a rectal pelvic exam when women first complain about the tell tell sypmtons of ovarian cancer. I am in remission now and am grateful to my family and friends who gave me the encouragement and strength to battle this monster. Let's find a test for early detection so the same story doesn't need to be told over and over again.

The Great!

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

reaching out to ovarian cancer survivors and encouraging them to become active in their communities to advocate for early detection research.

Ways to make it better...

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

encourage more collabrative actions with NOCC to further the advancement of research.

More feedback...

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

attending the Ovarian Cancer National Allicance in Washington DC and meeting other ovarian cancer survivors.

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

very dedicated and educated on the cause to fight ovarian cancer.

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

make inroads to finding a test for early detection and a cure for ovarian cancer.

Ways to make it better...

I had more time to learn how to be a better advocate for other women.

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

obtaining funding to support research to discover a test for early detection and research for a cure for ovarian cancer

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

this organization is a God-send to ovarian cancer survivors and their families.

When was your last experience with this nonprofit?

2009

July 24, 2009

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July 24, 2009

The Ovarian Cancer Naional Alliance has provided us, as a small local Ovarian Gynecologic Cancer Alliance in a small town, a larger National presence and a BIG voice. The legislative branch extends opportunities and include us in their year round monitoring and dogged lobbying on behalf of women's health issues in the government process. The good that they do is unmeasurable. The facilitators have nurtued us when we were just learning and beginning by providing awareness material and expertise. The Board and Officers continue to listen to our ideas, our concerns, our focus as it changes and incorporates the essence of all these good things into their annual business plan. We appreciate their ear as well as their voice. The organizers and planners of the National Conferance feed our need for knowledge and allow us time for kinship and comaraderie. We approach the "Hill" on Lobby day as an inspired Tide of Teal, determined to be heard and make a diference. Every conferance is differnt and each one has a particular character. It remains a good thing and an inspiration for the next year.

The Great!

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

Laws passed which positively impacted women's health issues, money allocated for research, grownth in national awareness, suport for research and educational projects, engaging volunteers to become productive agents of change.

Ways to make it better...

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

More feedback...

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

The focus on interaction and their apreciation of opinions and suggestions.

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

Very good at what they do, friendly.

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

Serve better food and find a cure and/or a diagnostic tool Ovarian cancer - not particuarly in this order.

Ways to make it better...

I was younger, that being said - maybe a more relaxed pace, more opportunity for small sessions to include many "new things" to choose from, shorten long plenery sessions! Whew, this year they were tough on the back and circulation. Fountian of youth!

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

Legislators, drug companies and Health care providers - no one seems to be listen until they get sick or it's their Mother...

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

I am glad to be a part of this process!

When was your last experience with this nonprofit?

2009

July 24, 2009

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July 24, 2009

This organization is bringing together women with ovarian cancer and their supporters to help raise awareness, provide a sense of community and change perception. Surviving is possible, there are recognizable symptoms. Learn them and protect yourself and your the women in your life.

The Great!

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

bringing a strong sense of community. Moving research forward. Raising awareness

Ways to make it better...

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

Make as many alliances as possible in the cancer world.

More feedback...

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

Their committment and energy.

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

Terrific and dedicated.

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

Bring its Surivors Teaching Students (for medical students) program to EVERY medical school. It could reach ALL women with ovarian cancer, and hopefully raise awareness of all gyn doctors as to the issues.

Ways to make it better...

They more strongly acknowledged the role of complementary, alternative (CAM), natural cancer therapies while discussing conventional treatments.

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

Growing more awareness, getting more research.

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

They are a great group with an uphill battle.

When was your last experience with this nonprofit?

2009

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