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June 17, 2010

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June 17, 2010

My sister is 5-year survivor and in honor of her cancerversary I threw an event to raise funds for the Ovarian Cancer National Alliance in hopes of raising awareness.

The Great!

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

They are doing work that is severely lacking in our government and research industry.

Ways to make it better...

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

I would make sure they had ample funds to carry on with their cause.

More feedback...

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

the staff made is super simple to obtain third party event forms and donation envelopes.

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

they were helpful and motivated.

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

help eradicate this disease by making sure all women and men out there know which symptoms to look for.

Ways to make it better...

this disease never existed

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

need for more money and possibly donors.

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

KNOW THE SYMPTOMS. HELP SAVE A LIFE.

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2009

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

More feedback...

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 17, 2010

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June 17, 2010

I recently lost a loved one to this disease and I needed to find resources for support groups to help with the grieving process. I came across OCNA's website through a google search and found some excellent resources for what I was looking for.

The Great!

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

The organization's supply of resources for the general public is of great value to those affected by this horrendous disease.

More feedback...

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

their desire to raise awareness

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

I haven't met any of the staff members

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

change the face of ovarian cancer

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

June 17, 2010

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June 17, 2010

The Ovarian Cancer National Alliance is a very important and well run non-profit organization. So many women do not know the symptoms of this dreadful disease or realize how important it is to recognize them early. Education is needed in all sectors, including medicine,and more research is needed. The Ovarian Cancer National Alliance works hard and successfuly at education and awareness building and at research. The organization mixes sound non-profit management and passion for the cause beautifully. All of the leaders in the organization share a passion for saving women's lives, the intellectual grasp of the issues and the needs, and great compassion for those who have had the disease. The stories one hears at their meetings are compelling.

The Great!

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

listening to the stories, in sharing the literature and other awareness building items they produce, and in seeing them succeed in endeavors like Johanna's Law: The Gynecologic Cancer Education and Awareness Law.

More feedback...

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

The commitment I see in all of the leaders and volunteers.

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

compassionate, caring, intelligent, and effective.

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

make all women and doctors aware of the symptoms.

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.

More feedback...

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.

More feedback...

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

August 3, 2009

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August 3, 2009

As an Ovarian Cancer Survivor I have found great strength, hope and determination after having been associate with OCNA. The staff is very friendly, willing and knowledgeable. I have attended 4 OCNA conferences and participated with 4 Capital Hill Days. The conferences are structured in such a way so that there is always a interesting speaker or lecture to attend

The Great!

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

leaps and bounds. There were more men, women and children involved in Capitol Hill Day in 07/09.

Ways to make it better...

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

Not knowledgeable in the infrastructure of the organization to effectively answer the question.

More feedback...

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

the wonderful people that otherwise I would of never had the chance to meet.

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

friendly, courteous, knowledgeable and more than willing to help in any situation.

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

1) fund a researcher 2) able to have the funds to pay for more women to attend the confeences

Ways to make it better...

there was a little bit more time between the sessions.

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

Again having no knowledgeable of the infrastructure of the organization to effectively answer the question.

When was your last experience with this nonprofit?

2009

August 1, 2009

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August 1, 2009

This was my second conference and once more, I loved it! I attended with the local Memphis leader and realize how much work we have to do.

The Great!

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

the better registration process.

Ways to make it better...

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

keep spreading the news.

More feedback...

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

the enthusiasm of the staff and volunteers.

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

OUTSTANDING!

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

give it to researchers for Ovarian Cancer.

Ways to make it better...

I'd like to see the name tags with LARGE print first names and "story line". For instance mine would be II breast 2003, IIIC ovarian cancer in 2006,BRCA1 positive. Also more sit and chat time, focus groups? Another thing would be to have an easel with paper near the registration table so folks could leave a note for others.

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

continuing to spread the message.

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

I loved doing the Legacy Corner but was a little nervous and stiff-feeling. :(

When was your last experience with this nonprofit?

2008

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

more

July 31, 2009

I have been involved with the Ovarian Cancer National Alliance since 2002. I am currently a board member. It has been an honor to work with this group as they have grown to bring awareness about ovarian cancer to the general public, worked with the medical community, other national health organizations and Congress to change the face of this deadly disease.

The Great!

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

how they are raising awareness about ovarian cancer through their signature program education the medical community where survivors present the program Survivor's Teaching Students Saving Women's Lives and their very active advocacy program.

More feedback...

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

The Ovarian Cancer National Alliance has a very dedicated board who does not just sit on the side lines. Each board member has unique skills that has enabled OCNA grow to the stature they are at today.

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

young energetic, very dedicated to the mission of the Ovarian Cancer National Alliance.

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

Better organize the survivors who are not aware of the work this organization does. Better advocated for funding for medical research to improve outcome for ovarian cancer patients

When was your last experience with this nonprofit?

2009

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