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January 25, 2010

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January 25, 2010

My experience with Voices of Survivors has been an unexpected gift to me and my family. I had no intention of having 'my voice' heard or my story told ... I figured that when I had surgery to remove a Desmoid tumor, then I was done. That wasn't the case ... and there is SO much more that goes into being a survivor than the initial diagnosis and treatment. While those things are totally life-altering, I never thought to prepare emotionally for the after-effects. Voices of Survivors has given me an outlet for my emotional/mental responses to cancer. I've read stories of people who have been in this battle for many years and also newbie's like me - but we all share a common thread ... we are survivors of cancer and practice the act of survivorship in our daily lives. I am grateful to Lynn Lane and for the many wonderful people that I have met through VoS - without them, I would have never shared my story and realized the depth of emotions that comes along with this diagnosis.

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The Great!

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

finding 'my voice' .... and realizing that I had much more of a story that needed to be told. Especially for my own growth and mental well-being.

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

It's very personal. No one puts on a front. No one pretends to be something they are not.

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

Lynn Lane - unwavering devotion to what survivorship means to each individual person.

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

Give a personal face to cancer and help others who may not have access to the resources that are available in that way.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

January 25, 2010

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January 25, 2010

I was given the opportunity to share my "voice" on camera and write my story. Not only did this opportunity potentially help others not feel alone, but it was also cathartic for me. Whenever I begin to feel overwhelmed with fighting cancer, I always go to voicesofsurvivors.com. Reading and watching the videos help me feel a sense of community.

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

the amount of support I have felt.

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

awesome!

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

January 18, 2010

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January 18, 2010

Voices of Survivors is a fantastic organization and they literally give a VOICE to cancer survivors so we can really show our family and friends what life is, day in, day out, for a cancer survivor.

The Great!

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

Compiling my thoughts about what it is to be a survivor. When friends and family ask what cancer survivorship means to me, I'll have a well-worded statement to give them and they'll know how this is to me.

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

Reading my friends stories, hearing their thoughts and being able to share my poetry

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

INCREDIBLE!!!!!!!! So Supportive! It is amazing that Lynn Lane represented Voices of Survivors in Ireland!

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

Give a voice to EVERY cancer survivor, and let the public know about ALL the different types of people... young, old, black, white, doctors, factory employees, children, teenagers...who battle cancer, some every day of their lives.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

January 16, 2010

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January 16, 2010

Not only is Voices of Survivors a welcome and needed part of the cancer survivor's world but so is Lynn Lane, their founder and director. Daily, I follow the website and the VoS social media (twitter & Facebook) that networks us survivors and patients together to offer aid, support and information to one another throughout the day. The powerful and moving videos of survivors mean so much to us who want so badly to survive, too. And not just hang on but do it in style, as Lynn and his many featured survivors do! Lynn's super spirit permeates everything he does. His joy, gentle wit and rollicking humor are something I look forward to every day whether he's introducing a written voice telling someone's heartfelt story or eliciting someone's inner beauty and humanity in a survivor video. I look forward to Lynn's various postings each day and eagerly look forward to the videos of survivors telling their stories especially. Lynn is a hero to so many of us and his infectious good humor and bright outlook on life are such a boost in everything he and VoS do. The powerful stories of cancer survivors mean so very much to a patient who struggles with uncertainty, fear, fatigue and sometimes pain. I repost many of Lynn's videos and get such great feedback from other survivors. By example and explanation, we learn coping tips, strategies, successful attitudes, how to reach out for the right kind of help or a second opinion, how to be pleasantly proactive, how to communicate better with our health care teams, how to have a better relationship throughout the strain of illness and treatment. It's valuable stuff. Men, women, young, older, from all around the world, each survivor Lynn captures has something to teach us about dignity and life. Sometimes we lose people. Not all survivors survive. When cancer claims someone, it is so very dear to have these videos or their written words to remember them by. The videos and written word essays are quite an archive if anyone wanted to study the qualities of survivorship. My only criticisms? I wish Lynn had help & the budget to do even more of the videos. One a day would suit me fine! I also wish it were a little easier to access older videos on the website. I imagine Lynn could solve this problem with a large bequest or a grant or two! And the

The Great!

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

seeing the responses from cancer patients and survivors on facebook and twitter.

Ways to make it better...

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

Add staff that had a similar level of passion, enthusiasm, warmth and genuineness. Growing while preserving the intimacy and personal feeling.

More feedback...

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

The amazing range of humanity captured in the videos.

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

I've only met Lynn and he is the unsinkable Molly Brown on the Titanic that is cancer.

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

Be a powerful voice in cancer advocacy. Make some great documentaries. Organize & run some kick ass physical training programs & bike races for cancer survivors. Sport is the antithesis of cancer. it's a great way to overcome the shadows of helplessness

Ways to make it better...

The website made searching and accessing archived material easier. Costs $$, though.

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

Finding the right staff, growing without losing the intimacy & power

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

Lynn himself is so much a part of the while spirit. These videos are so deeply personal that growing too big might endanger the truthfulness and power.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

January 15, 2010

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January 15, 2010

Voices of Survivors -- established by cancer survivor Lynn Lane -- is one of the few start-ups that not only surpasses its first year intact but establishes a distinct identity and service for people affected by cancer. Its mission is clear and unique: to depict the story of cancer survivorship and co-survivorship directly from those experiencing it, from short video-taped stories, to filmed conversations and articles written by cancer survivors. In a short time the incredible variety of cancer survivors -- by age, type of cancer, nationality and race -- becomes illuminating. To hear each individual define survivorship is inspiring and touching. I am always moved by the stories and the incredible courage, humanity and courage depicted. Lynn Lane and the Voices of Survivors Foundation have changed the cancer landscape and will continue to do so. I am happy to support and recommend this organization and its excellent work.

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The Great!

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

getting to know and connecting with many of the survivors featured on the site.

Ways to make it better...

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

I have no changes to make at this time.

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

setting aside time to think and define how cancer and survivorship has changed so many lives.

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

Outstanding and dedicated in every way.

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

establish a “Voices of Survivors” center for the exploration of every aspect of cancer survivorship in all media formats.

Ways to make it better...

My experience was excellent in every way.

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

maintaining the steady flow of regular (familiar) features while introducing new ones.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2009

January 15, 2010

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January 15, 2010

Voices of Survivors Foundation gives a voice to cancer survivors and enables them to share their stories with others affected by cancer. I was able to share my own journey with the founder and executive director Lynn Lane and countless others. This enabled me to talk about important issues that effect cancer survivors in similar situations. Sharing my experiences was very helpful, but more important the Voices of Survivors foundations provides me the ability to learn about other survivors; their triumphs and struggles. This has helped me by knowing I am not alone in my experiences and I am able to reach out to other survivors. Lynn Lane is constantly coming up with new ways to support cancer survivors.

The Great!

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

sharing my story and being given the opportunity to talk about end of life issues for cancer patients.

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

Working with the founder and executive director Lynn Lane

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

January 15, 2010

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January 15, 2010

I first met Lynn Lane, the Executive Director of Voices of Survivors, in August of 2009 when he relocated back to Houston to focus on growing the foundation. As a 7-year survivor, I took great interest in learning more about his work in sharing stories of hope and survivorship. Indeed, the first evening after meeting Lynn I spent a solid 3 hours online reading through story after story written by individual survivors. The writings are candid, raw and often emotional. They help you see past statistics and into the hearts and minds of people who are living with or have overcome cancer. Some made me cry, many made me laugh, and all of them touched my heart. Then Lynn asked if I would like to share my story. I wasn't super confident about sharing until he said this: "You have a powerful voice. You should share it." OK, I'll try. It was the most challenging piece I have ever written. How do you fit 7 years into words? How can my story of survivorship be molded into paragraphs? After weeks of trying, my story unfolded into words and Lynn put it on the website in the "Written Word" section. Just the practice of writing the piece was therapeutic somehow. I also hoped that my story would reach anyone who might need it. I wanted other survivors of MDS to know they are not the only one. For other young adult cancer survivors, you have something in common. In the weeks after my story was published, three people surviving with MDS have contacted me. A mini support group. One of the things I most admire about Lynn is his accessibility - he is widely available to have coffee, to speak on the phone and is very responsive on email. There are not many Executive Directors who will take your call at 9pm if you need someone to listen. Lynn is also a champion of self advocacy: You are your own best advocate. That's a powerful message, especially in this age of insurance giant and corporate driven health care. He truly cares about the individual survivor. I truly appreciate the work of Lynn Lane and the Voices of Survivors. If you are a cancer survivor or if you know someone affected by cancer I hope you read through and find hope in the stories of survivorship.

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

the relationships that have been formed as a result of sharing my story of survivorsip.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2009

January 15, 2010

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January 15, 2010

Lynn Lane and Voices of Survivors allows people who have cancer tell their stories and experiences with the disease...through Facebook and other social networking sites, we can converse with others....giving each other support, treatment options and HOPE. I have met a number of Great friends through VOS's and will have them for the rest of my life. If you have cancer, this is a GREAT site.

The Great!

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

that it made me realize that I wasnt fighting this disease alone.

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How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2010

January 15, 2010

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January 15, 2010

This amazing organization has brought me so much inspriation and hope during my fight with cancer. There are so many days in this battle where I feel alone thinking nobody understands what I'm going through. I can then read the stories and listen to the testimonies of so many that have fought before me. Not only has this organization eased so many fears, it has taught me how to survive in so many ways! I am so grateful for the existence of Voices of Survivors!

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The Great!

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

having inspiration to keep going in my cancer battle, knowing I am not alone. I have hope!

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

the honest nature of the stories, real life from real people

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

expand it's ability to do video projects of surivors all over the world and reach so many who are living with cancer

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

January 15, 2010

more

January 15, 2010

Voices of Survivors has helped thousands of cancer survivors, patients and caregivers. This organization is by far the best information, advocacy and support group that you will ever find on the topic of cancer. Cancer Survivors share their stories and struggles with this hideous disease and it is done in a quick video, the written word and the newest format, conversations. There is so much power in hearing other peoples stories and to be able to put not only a face, but a voice behind these stories, is incredibly powerful. The cancer survivor world is becoming united as 1 big family and a lot of that is because of Voices of Survivors! You know the saying - there is strength in numbers! I can't say enough about the work that VOS Founder Lynn Lane does. He has touched more lives and helped more people than anybody I know. If the question is - Is Voices of Survivors worthy of a Great Nonprofit, the answer is 100% yes!!

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

It allows me to share my voice to other cancer survivors/patients and caregivers. Hearing/seeing other survivor stories is such an important part of a newly diagnosed cancer patients journey. Nothing says hope like hearing other like people's stories.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

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