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August 23, 2009

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August 23, 2009

When my husband received the shocking diagnosis of lung cancer (he didn't have any easily identifiable risk factors at the time), we turned to the well-know cancer/lung organizations to volunteer for Lung Cancer Awareness Month. Their response? Nothing, really. They only focus on smoking (my husband was a lifelong adamant non-smoker). The one organization which did respond immediately - Lung Cancer Alliance. LCA not only helped us organize a rally in a matter of days, but they continued to provide direction, training and support to further our advocacy withiin the state. Eventually I became volunteer C-Chair for LCA-CA. In all my experiences with LCA, I have seen their determined persistence and unrelenting efforts in the face of overwhelming stigma and apathy toward the disease. They produce an immense amount of work with an unprecedented low number of paid staff. This was made abundently clear to me when I would note the times on their return calls/emails during the late night or very early mornings. I have seen an immense change in the level of public discussion and a new interest in the disease (rather than simply the issue of smoking) on the part of established organizations over the six years since my husband's diagnosis. This is due directly to the efforts of Lung Cancer Alliance. I whole heartedly recommend this organization. With a significant increase in resources and support, we CAN achieve the LCA goal of NO MORE LUNG CANCER!

The Great!

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

Better awareness in the general public, medical professionals and among legislators, which has resulted in formal recognition (proclamations) and supportive legislation on state and federal levels. More support of the disease in other organizations.

Ways to make it better...

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

Expand its capabilites with use of new technologies to improve its networking capabilities.

More feedback...

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

Their dedication and responsiveness.

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

completely dedicated to this cause and often worked themselves to exhaustion

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

probably make a huge impact on lung cancer survival rates by increasing the rates of early detection and intervention.

Ways to make it better...

LCA appears to do all within its power to achieve its goals.

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

improving public awareness of the organization and obtaining more resources.

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

Two thumbs UP, way UP on Lung Cancer Alliance.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2009

July 28, 2009

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July 28, 2009

I have been a lung cancer survivor for over 11 years. I became active with LCA shortly after my recovery and have remained an active advocate for this organization. During my journey with lung cancer I could find little information on lung cancer, treatment options, and support groups. I joined LCA because it was the only organization that was dedicated to supporting, education, and advocating for lung cancer patients and those at risk for the disease. This organization gave me the skills to advocate and lobby for lung cance patients here in Maine. Through their support I have been successful in getting a bill that I wrote passed to help raise awareness. I have also been very successful in meeting with our Govenor in declaring Lung Cancer Awareness Month. I have been successufl in holding public forums with the Governor and the legislative body. This is the only organization that has been active on a National level to change health care policy through legislative action. They see the challenges that need to be overcome and meet them head on. it is through their support and education that has helped me effect change in the State of maine

The Great!

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

The work that I have done here in Maine with the Governor and legilative body.

Ways to make it better...

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

Continue lobbying on a federal level because there is were change can be effected.

More feedback...

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

Learning how to be effective with the legislative body.

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

Simply outstanding. Ready to help and make a difference in the lung cancer community.

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

Provide research grants.

Ways to make it better...

I am not sure that I could have had a better experience with LCA than what I have had over the last 10 years.

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

Not enough staff.

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

I believe that this organization has grown in leaps and bounds since moving to the Washington DC.

When was your last experience with this nonprofit?

2009

July 27, 2009

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July 27, 2009

There are some fantastic lung cancer advocacy groups out there but this is the only one devoted to changing national policy and re-directing our tax dollars towards lung cancer research. Lung cancer kills more people than any other cancer (and twice as many women as breast cancer) but is the least funded of all of the major cancers. The Lung Cancer Alliance doesn't discriminate based on type of lung cancer, smoking history or anything else. They help people with lung cancer, period. They also have an excellent patient support program which includes a peer matching system and a fantastic online support group at www.inspire.com. I can't think of enough good things to say about this amazing organization.

The Great!

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

the powerful online support group that gives patients and their families a way to connect with others affected by lung cancer and stay informed as well as in touch.

Ways to make it better...

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

start a marathon program!

More feedback...

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

knowing that we're making a difference in changing how the world understands lung cancer, and possibly working towards raising more research dollars for this complicated, terrible disease.

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

smart, compassionate, a-political, unbiased and helpful.

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

put a drop into the enormous bucket labeled "money needed to cure lung cancer."

Ways to make it better...

we'd been able to get more money allocated to lung cancer research and treatment. It's a slow process and I'm in it for the long haul!

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

how many other organizations there are that try and compete rather than work with the Lung Cancer Alliance.

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

we need to find a cure for lung cancer.

When was your last experience with this nonprofit?

2009

July 27, 2009

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July 27, 2009

Lung Cancer Alliance offers top notch and comprehensive patient support programs as well as works tirelessly for all of us affected by the disease by fighting to secure the funding from the federal government necessary to make an impact on its devastation. This is particuarly critical since so many other types of cancer are more highly prioritized by the public even though lung cancer is more deadly than any other.

The Great!

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

The first big commitment of funding from the federal government to provide much needed research.

More feedback...

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

The people involved with the organization have their hearts in it. They make me believe that they are really fighting for me.

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

Exceptional. Bright. Caring. Personable.

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

Make a big stride toward curing this devastatingly deadly disease.

When was your last experience with this nonprofit?

2009

July 24, 2009

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July 24, 2009

I have been involved with Lung Cancer Alliance for five years since I was diagnosed with lung cancer at the age of 44. I can not imagine my health journey without this nonprofit organization. The resources, employees and links have been instrumental in my care, support, awareness and advocacy. Lung Cancer Alliance is single handedly leading the fight for lung cancer patients and families to the media, government, research and medical community.

The Great!

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

legislation passed in the United States Congress.

Ways to make it better...

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

try to raise significant donations so that LCA could have more resources to do their valuable work.

More feedback...

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

the feeling of comfort knowing there is an organization being my voice in the world while I devote my energies to fighting my cancer.

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

magnificent, caring, comforting, knowledgeable and resourceful.

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

be able to double or triple their efforts to make a difference for lung cancer patients, supporters and family members. There is even a possibility with additional funds there could finally be an improvement in the survival rate for this terrible disease.

Ways to make it better...

there were more organization like LCA fighting for lung cancer patients, supporters and family members.

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

the stigma of smoking and lung cancer. It will be important to educate the world that nonsmokers are also vulnerable to lung cancer.

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

thank god for the staff of the Lung Cancer Alliance!!!!!!!!!

When was your last experience with this nonprofit?

2009

July 13, 2009

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July 13, 2009

I was diagnosed with Lung Cancer in Oct, 2006. As devastating as that news was, our family began researching all we could immediately. We became connected with the Relay For Life project through the American Cancer Society. This year, I was challenged to "Fight Back" at the Relay. I chose to learn as much as I could about the myths and stigma of lung cancer. Since I have never smoked, it was shocking that I experienced much of this prejudice during my diagnosis and treatment. Nurses, doctors and other health care professionals assumed I smoked. In doing all the research, I came across the Lung Cancer Alliance. They welcomed me and embraced me. They sent me an incredible amount of material, including a t shirt which read, "I never smoked and I have lung cancer", which I wore proudly at the Relay event in May. The information and educational material that they share is phenomenal. My experience with the organization has been rewarding and enlightening. I am so pleased that I found them and only hope I can give back.

The Great!

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

the way that they share education/information.

Ways to make it better...

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

not change anything

More feedback...

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

Corresponding with the local sponsor.

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

Very friendly, kind and extended themselves.

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

Destroy the myths surrounding lung cancer, which could create an atmosphere where research specifically for a cure for lung cancer would exist.

Ways to make it better...

Nothing

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

Getting the word out

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

Nothing

When was your last experience with this nonprofit?

2009

July 11, 2009

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July 11, 2009

I am a lucky 6 year lung cancer survivor. I was diagnosed at stage 3A. I had surgery followed by chemotherapy and radiation treatment. As a result of the radiation, two of my coronary arteries became weakened and would not allow the plaque to come through. I had dual by-pass surgery 9 months ago as a consequence. I lost my father, uncle and two friends to lung cancer. We were all never smokers. I also lost two friends who had given up smoking decades ago. When I saw a newsletter in my surgeon's office published by the Lung Cancer Alliance, I knew I had to become its advocate to help erase the stigma, elevate awareness, and change public health policy. I am now working with the Lung Cancer Alliance as a "full time" volunteer to accomplish our goals. I feel very committed and am thankful to the Lung Cancer Alliance for the support, guidance and energy that has been provided to help realize our efforts.

The Great!

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

patient support, Department of Defense bill appropriating $20M to lung cancer, and the introduction of HR2112 and S332 - Lung Cancer Mortality Reduction Act of 2009 - simultaneously in both Houses of Congress, and the updates and literature it provides.

Ways to make it better...

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

give clearer messages. Sometimes, I am not sure of what will be or can be done - dual messages.

More feedback...

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

the passion, commitment and professionalism of the staff.

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

professional, committed and passionate.

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

hire staff to organize and fully support state chapters in all the states.

Ways to make it better...

there were quicker follow-through and clearer messages.

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

Lack of funds to organize and fully support state chapters in all the states.

When was your last experience with this nonprofit?

2009

July 11, 2009

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July 11, 2009

When I was first diagnosed my oncologist scribbled a cancer website on the back of his business card-This was to be my reference point for Lung Cancer.Unfortunately there was very little info on this site.Most of it referring to smoking cessation. After hours, days, searching I found LCA-Formerly known as (I think it was called) ALCASE. Finally!A place that dealt with Lung Cancer-NOT the stigma,blame & shame.Real people, sharing the difficulties of dealing with this disease. Dave Grant, one of the co-founders, fought till his dying day, the very same issues we still deal with today.Stigma, lack of early detection screening,lack of funding,lack of support.This was 3 years ago. LCA has become the VOICE of anyone affected by Lung Cancer. Fighting on every level for us. My Doctors now have LCA Literature flooding their offices(sent to me by LCA). Raising awareness for this disease is no simple task. I am forever grateful that we have this honest , courageous group behind us. As Dave Grant used to say "One starfish at a time"-Together we will change history.Thank you LCA.

The Great!

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

raising awareness for lung cancer.

Ways to make it better...

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

keep doing what they're doing.

More feedback...

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

No longer feeling alone in this isolating battle.

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

Kind, Empathetic, Helpful.

Ways to make it better...

I had no need for a Lung Cancer Group...

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

Govt. funding, American Cancer Society, Stigma.

When was your last experience with this nonprofit?

2009

July 11, 2009

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July 11, 2009

In 1971 my father died from lung cancer. In 2007 my husband was diagnosed with small cell lung cancer and passed away in December 2007. I was shocked to realize that in 36 years nothing had changed in the course of treatment and, more importantly, the diagnosis. After losing the 2 most important men in my life to this horrible cancer, I found out about the Lung Cancer Alliance and became an advocate because people need to be educated about lung cancer and the fact that money is needed for research. This cancer KILLS MORE AMERICANS THAN ALL OTHER CANCERS COMBINED every year and A CURE MUST BE FOUND. The support and encouragement of this group is phenomenal and the word is getting out there as a result of LCA. Doctors who refuse to do CT scans or MRI's when asked by a patient's family must be censored and removed from practice. LCA is a professional organization and working extremely hard to get the word out. They are doing an awesome job.

The Great!

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

the way it has grown in the MA chapter and the interest it has generated.

More feedback...

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

the commitment everyone has to educating the public and getting the word out about a need for major research and finding a cure.

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

people who all experienced lung cancer in their own families.

When was your last experience with this nonprofit?

2009

July 10, 2009

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July 10, 2009

Amazing people in this organization doing outstanding things. While much of their focus is advocacy, patient support is their mainstay, and I'm so lucky. Every time I get a diagnosis, or have a question, I run to their office. I'm so fortunate to be blocks away. They have educated me, hugged me and cared for me and thousands of people just like me. I sincerely don't know what I would have done without Lung Cancer Alliance.

The Great!

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

the faces of its advocates, patients and caregivers.

Ways to make it better...

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

cry every day.

More feedback...

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

the caring people that have educated me.

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

the very BEST in my forty years of nonprofit experiences.

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

Run the type of education/communication program that it needs to, to save lives.

Ways to make it better...

they were funded to the max!

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

lack of funding.

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

They give me HOPE.

When was your last experience with this nonprofit?

2009

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3 hours of volunteer time for this nonprofit will...

Host or join a Shine A Light on Lung Cancer Vigil in your community to raise awareness and provide hope, compassion and support for all those impacted.