What a Week at #LCSummit16!

What an incredible week spent with some amazing lung cancer survivors and advocates in Washington, DC at the 8th Annual Lung Cancer Summit. Here are the top 7 highlights from the event.

  1. To kick off the event on Sunday night, we were fortunate enough to have a special musical performance from lung cancer survivor, Ginger Tam (vocals) and her cousin, Schulyer Slack (cello). Ginger has performed at past Shine a Light events and uses her music to raise awareness for the cause.

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    Ginger and Schulyer kick-off the Summit with a musical performance.

  1. On Monday, we heard from our keynote survivor speaker, Dawn Horner. Dawn just finished running a half marathon, even after her diagnosis. She has taken her lung cancer experiences and is turning them into something positive by giving back through Lung Love Run/Walk Portland.
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Dawn Horner sharing her lung cancer story.

  1. For the first time, we awarded the Michael G. Oxley Advocacy Scholarship Fund and Leadership Award to our very own Sheila Ross! The award embodies all that the late Honorable Michael G. Oxley, former Chairman of the Board of Lung Cancer Alliance, represented in his long and accomplished public service career – leadership, fairness, integrity, purpose, compassion, and service to others. There is no one more fit for the award than Sheila, a two time lung cancer survivor and the ultimate lung cancer advocate, having served with Lung Cancer Alliance as Special Counsel for 15 years.
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The late Honorable Michael G. Oxley’s wife and son present the Advocacy Scholarship Fund and Leadership Award to Sheila Ross.

  1. On Tuesday, 65 survivors and loved ones from 26 states met with over 100 congressional representatives to discuss the importance of lung cancer. It was a BIG day to say the least!
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While trying to stay dry, advocates snap a quick photo before storming the Hill.

  1. Dinner following our Hill Day was full of laughs and tears, with survivors and loved ones sharing highlights from their day. Awards were also presented to Ken Wheatley, for his leadership over the past five years as California Chapter Co-Director, and Shelly Engfer-Triebenbach for her ongoing efforts and dedication to the cause.
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Shelly and Ken receive the 2016 Leadership and Volunteer Awards.

  1. We finished the Summit with a Congressional Briefing on Capitol Hill discussing the devastating facts surrounding women and lung cancer. We heard from some very impressive leaders in the medical community making great strides for lung cancer and women.
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Congressman Rick Nolan, Co-Chair of the Lung Cancer Caucus with speakers at the Women & Lung Cancer Congressional Briefing.

  1. The best part about the Summit was that everyone got involved, even those who were not able to attend in person. Through Facebook and Twitter conversations, the event expanding beyond Washington DC. Keep up the buzz! It is a great way to share your story, raise awareness and educate.

Don’t forget, there are lots of ways to stay connected and involved in the lung cancer movement all year long. Click here to learn how!

A Lasting Legacy

By Nancy Labinger

Diane posing for the camera.

Diane posing for the camera.

When I ran into Diane a few years ago, we talked about the old days, everything from friends to fashion to politics. Our sidewalk rendezvous became dinner.

Once we started talking we never stopped.

We became the best of friends.  I learned that although for Diane the fact that she never married or had children was a disappointment, her life was very full of friends.  Loads and loads of dedicated, loving dear friends.  Wherever she went there were strong connections. The saying “friends are the family we create for ourselves” says it all.   Friends became her family.

She adored Roxie her Yorkie, all things fashion, movies, pilates, art and travel. She loved historical fiction and was particularly interested in the Holocaust. She was a devout Rolling Stones fan and never missed a concert in town.  She had a smile that lit up the room. With her twinkling brown eyes, she was undeniably beautiful.   She was forever posing for the camera, for the glam shots.  And as you can see, the camera loved her.

In the last couple of years, I accompanied Diane to her doctors’ appointments.  She was for the most part, upbeat and optimistic.   She talked often about silver linings. Silver linings and cancer.  Imagine that.  Her silver lining was that there was a targeted chemotherapy for her specific type of cancer.

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Diane next to her survivor banner at an awareness event.

She had a joie de vie and was full of life. In the ten years since her diagnosis, there were a lot of ups and downs. But this new drug gave her a quality of life that allowed her in her last 14 months to travel twice to Europe and to Palm Beach.

Throughout her time as a lung cancer survivor, Diane felt lucky. She wanted to help others diagnosed and give back. Turn her incredible luck and love of life into something positive.

She decided to leave her legacy in many ways, one of which was an estate gift to Lung Cancer Alliance. She believed in their mission and connected with the staff, meeting with the President in her beloved Chanel boutique on Michigan Avenue one May day.

Diane lost her battle with lung cancer a few years ago. I am not only incredibly lucky to have known her, but honored to call her my friend; to be considered a part of her family. Diane’s optimism, positivity and beauty will live on through stories, laughs and memories.

We are grateful to Diane for including Lung Cancer Alliance in her estate. Through her legacy, we can continue to help those living with and at risk for lung cancer. Learn more about how you can include Lung Cancer Alliance in your estate planning.

Family Comes First

Shelly and her family

Shelly and her family

By Shelly Engfer-Triebenbach

This Mother’s Day is a very special day for me. It reminds me of how fortunate I am to not only be a mother to my two beautiful children but also to be able to offer them the best version of myself.

I was diagnosed with stage IV adenocarcinoma on June 11, 2013. At that time, my daughter Kadyn was 10 years old and my son Chase was seven. Because I had six blood clots on my lungs, I was kept in the hospital for a full week while they ran a barrage of tests leading up to my diagnosis.  My kids could tell something wasn’t right. I was and remain very open and honest with them about my disease, answering any questions they have.

After finding out I have the ALK mutation, I started on Crizotinib, nine months later after progression I enrolled in a clinical trial for Brigatinib.  I have been stable on Brigatinib for 16 months.

My lung cancer affected Kadyn and Chase in different ways and at different times in the process. Chase was really bothered when my hair fell out about two weeks after starting chemotherapy. ‘When will it grow back?’ and ‘Are you going to wear a wig?’ were very common questions from him. He didn’t and still doesn’t comprehend the seriousness of my disease.

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Shelly, Kadyn and Chase

My daughter didn’t fully understand the diagnosis at first, but she knew that it was serious because of all the changes.  One major change was my job.   I am a vocal music teacher by trade. When I started chemotherapy treatment I decided to not teach in fear of catching something from the students since my immune system was already compromised.

Kadyn dealt with my diagnosis by taking action and learning about lung cancer. Now in 7th grade, she expanded her knowledge of lung cancer in a presentation she did for FCCLA (Family, Career, Community Leaders of America) titled ‘Got Lungs?’  She focused on the unbelievable facts about this awful disease and the disparity of funding.  Her main focus was ‘all you need are lungs to get lung cancer.’  She received an almost perfect score on both a regional and state level! I am so proud of her for having the courage to share her story publicly.

This past fall I went back teaching part time.  Not only did I miss the students, but I also missed the professional community and collegial friendships.  I feel so blessed to be feeling well enough to be back in the classroom part-time.

Lung cancer has definitely changed my life, some for the worse (obviously) and some for the better.  I have different priorities in my life now.  I no longer take time and events for granted.

Before diagnosis I frequently would be double booked with my professional obligations and my kids’ activities.  No more!  My family comes first.  Reflecting on everything that has happened, it is sad that it took getting this horrific disease for me to get my priorities straight.

As a mother you are always thinking of your children first – their well-being, happiness and feelings. I was determined to stay strong and never give up for them. Witnessing their courage throughout the process gave me a strength I didn’t realize I processed.

For this Mother’s Day, my advice to anyone (especially the moms) surviving lung cancer is always be your own advocate, put family first and if you cannot find strength in yourself, do it for those who love you. I have my children to thank for reminding me of these important things and for keeping me present in this moment.

 

Passion and Logistics

Barbara Mendoza

Barbara Mendoza

By Barbara Mendoza

I joined the Lung Cancer Alliance (LCA) as Office Manager in June 2015. Having worked in nonprofit organizations and office management for almost my entire career, I feel quite at home in my work. I enjoy the nitty gritty aspects of administrative tasks, the sense of completion of checklists and solutions.  And though “office work” may sound dull to some, most administrative professionals in the world of nonprofits know that it is anything but! Another plus is when your organization seeks to make a difference in peoples’ lives and you realize that the mundane “office work” you do helps to support those on the frontlines of making that difference. You realize that life is more than profit margins.

My experience at LCA, however, has struck at a deeper level.  A dear friend of mine was diagnosed with advanced small cell lung cancer in late 2013 and by last June had already been through chemotherapy and several clinical trials.   His illness had brought me to my knees. In one of those weird confluences of how life sometimes works, I happened to be looking for new employment and also just happened to come across the job listing at LCA. Needless to say, my world came together.

One of LCA’s many strengths is its deep well of support for lung cancer patients, families, friends, and caregivers through phone support, education resources, information, public awareness, fighting for research funding (lung cancer has the highest level of cancer deaths — more than breast, colon and prostate cancers combined –and yet is one of the least funded in research and treatment) and early screening.

In working with my new colleagues, I found that support on a personal level.  They were there for me from the beginning, when my friend died a few months later, as well as now – for cancer is something that turns the timeline of our lives into “Before…” and handling “The New Normal” – treatment, survival, grief.  It also turns a person on the administrative side into a frontline soldier. A deliveryman remarks that he has just been diagnosed with lung cancer and I’m able to direct him to resources, treatment centers and further assistance.  I become outspoken now at the stigma lung cancer has – people asking upon hearing someone’s diagnosis “Oh, did he smoke?” even before saying “I’m sorry to hear that” — when in fact, almost 20% of lung cancer patients are never-smokers, and 60% have quit decades ago. Stigma causes underfunding of research dollars and adds unfair judgment and suffering to people and families who have enough on their plate already.

I am thankful that I am able to be a piston driving the engines of the nonprofit world. I am thankful that I can help extend a hand of hope to fellow human beings and fight the good fight to honor my friend’s life. One can find passion and purpose even in the most routine things.  I found mine.

 

Learn more about Barbara and the rest of our staff! 

 For My Mom

 

Riley's mom speaking at  the 2015 Lung Love Run/Walk Portland.

Riley’s mom speaking at 2015’s Lung Love Run/Walk Portland.

By Riley Bradach

Although I am 34 years old with a family of my own, I am still a huge momma’s boy. I’m her first born and have always owned that proudly. I’m close with my mom and I know I’m one of many who can say that–my mom has the ability to get close to everyone she meets. She’s energetic, positive and hilarious. If someone gives her an opening for conversation she’s going to find out their birthday, their career goals and a brief family history. She’s amazing like that.

I can’t overlook how funny she is. A lot of her best material probably isn’t fit for print but anyone who meets her finds out quickly that she is hilarious. She loves to laugh and does a great job making others smile and laugh as well. She’s fun to be around.

My mom was diagnosed with lung cancer in the fall of 2014. She didn’t smoke. She was eating right, working out and taking care of herself. She went to the doctor because of some discomfort and at her insistence she had her chest x-rayed. From there we knew something wasn’t right.

I was heartbroken but I was also angry. It was the type of feeling that I almost wished someone would tell me whose fault this was so I could just deck them. Being upset, angry and on the internet eventually led me to a Google search for lung cancer benefits in the Portland area, where we live. It was a relief to find Lung Love Run/Walk Portland last spring.

Riley (far right) and the Lung Love Run/Walk Portland committee at last year's event.

Riley (far right) and the Lung Love Run/Walk Portland committee at last year’s event.

At last year’s event we managed to have the largest participating team. It was easy to rally that many people–it was for my mom. She is one of those people you root for and love right away because you know she’s doing the same for you. It was a way to show my mom and the lung cancer community that people are taking notice and care. My mom even got up and said a few words in front of the crowd.  Considering just a week earlier she was positive her treatment would have her too sick to participate, it was amazing to see her in the sun on stage saying inspirational amazing things over a freaking microphone!

For completely selfish reasons I wanted Lung Love Run/Walk Portland for my mom. I wanted her to feel as much love and support as possible. To see her impact on others and their impact on her was something I hadn’t even considered. It was a powerful and positive day and I want many more powerful and positive days for her and everyone else impacted by lung cancer.

I’m finding that choosing hope and choosing positivity are important decisions to make each day. It’s not choosing to be ignorant or ignoring reality, but just deciding that you’re going to be positive. Being sure to lean on whatever it is you hold onto spiritually and your community helps. Just staying plugged in to your family and your community is important. You need them and they need you.

Join me, my family and our extended lung cancer community in the Pacific Northwest to walk with purpose at Lung Love Run/Walk Portland on June 1. Register today!

 

If you are an East coaster consider joining us for Lung Love Run/Walk Philadelphia at the Philadelphia Zoo on May 1. Learn more!

 

 

 

Reaching New Heights in DC

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Dave and his son, Matt, on one of their many climbs.

By Dave Clark, Lung Cancer Survivor

I am a climber. I climb mountains. I am currently working towards becoming a 46er—climbing every peak in the Adirondack Mountains in New York. In fact, I just climbed Cascade and Porter mountainsthis past weekend.

Climbing, for me, is as much mental as it is physical. Focusing on my goals and no matter how hard, always taking that next step. I never give up on a mountain.

I am also a lung cancer survivor. Diagnosed after a climb just last winter. I haven’t stopped climbing. Just the opposite, in fact. I am using climbing to tell a story. The story about a disease that for far too long has been ignored. A disease that is blamed on the people diagnosed.

My story and the facts about lung cancer have been featured in articles, highlighted at the hospital where I work and now, I am bringing all of this to Washington, DC.

I will be sharing my story to the attendees at Lung Cancer Alliance’s Lung Cancer Summit and taking it directly to the Hill and my members of Congress! I urge you to do the same. Join me in Washington, DC this May at the Summit so we can reach new heights together for all of those impacted by lung cancer.

See you there!
Dave

8th Annual Lung Cancer Summit
May 15-18, 2016 • Washington, DC
Lodging & meals provided.
Scholarships available.

Understanding Survivor Guilt

 

Tara presenting on survivor guilt at APOS on March 4th.

Tara presenting on survivor guilt at APOS annual conference.

By Tara Perloff, Sr. Manager of Support Services at Lung Cancer Alliance

As part of the Community and Support Services Team at Lung Cancer Alliance (LCA), I speak with lung cancer survivors each and every day. Some are newly diagnosed, while others are long-term (even 20+ years!). We talk about everything from diagnosis, second opinions, treatment, side effects, you name it.

Over the past four years working at LCA, I have been lucky enough to observe a jump in survivors in the lung cancer community. While survivorship is often portrayed as an over-the-moon, happy feeling that all people battling cancer set as their goal, many lung cancer survivors feel burdened by it, experiencing  emotions of guilt, anxiety and stress. I wanted to know why. My research led me to a phenomenon known as “survivor guilt.”

Survivor guilt is, by definition, exactly like it sounds: feeling guilty for surviving something (whether a disease or event) that others have not. Knowing that millions of people lose their battle to lung cancer each year, it made sense that lung cancer survivors would have survivor guilt. When I started to seek ways to help people cope with survivor guilt, however, I was surprised to find that little research had been done. Therefore, we took it into our own hands.

We wanted to see just how many lung cancer survivors experience guilt. We did this by surveying our patient community to measure survivor guilt using a certified psychology scale. Included in the survey was a definition of survivor guilt and participants were asked if they had ever felt survivor guilt throughout their lung cancer experience. Our results from the survey showed that 63.9% of lung cancer survivors have experienced feelings of survivor guilt. It confirmed what we knew, survivor guilt is felt by the majority of lung cancer survivors.

Why is this so important? This year, over 224,000 Americans will be diagnosed with lung cancer. With six new lung cancer drug approvals in 2015 and more on the way, plus the widespread adoption of lung cancer screening, we are going to see more and more lung cancer survivors than ever before!  Our goal is to make certain that your needs are accurately understood, heard and addressed by your health care team.

That process has already begun. Earlier this month, I presented our Survivor Guilt study to health care professionals who focus on mental health and the wellbeing of cancer patients at The American Psychosocial Oncology Society’s (APOS) Annual conference. Feedback was overwhelmingly positive and collaboration to expand this study is already underway.

We will continue exploring this topic in order to provide you ways to cope and enjoy each and every day as a lung cancer survivor!

If you are dealing with survivor guilt, have questions or want to help in future studies, please call Tara at 1-800-298-2436 or email support@lungcanceralliance.org.

Just Breathe

Nicole and Unc on one of their many runs together.

Nicole and Unc on one of their many runs together.

By Nicole Nelson

As I stood with the microphone in my hands, about to welcome the crowd, I quickly realized that this sea of people I was addressing has the same love and admiration for my uncle as I do.

My Uncle Donnie (or “Unc” as I call him), a Long Island native, found his home in the Binghamton, New York area as a young teen. It was there he married, raised a family and watched his father fight a difficult six month battle with small cell lung cancer 16 years ago. As I welcomed a crowd of over 400 to his recent benefit, I was truly humbled by this small town’s reaction to Unc’s diagnosis last October of stage 4 small cell lung cancer.

The diversity of the crowd at the benefit was also a testament to the character that is my uncle. From the nuns and other members of the parish he donates his time and efforts to; to the crowd of IBEW (International Brotherhood of Electrical Workers) brothers, where he has been a long time member of Local 325; to the Harley guys and fellow runners and to the family members we all added to the organized chaos.

It’s almost as though Unc has lived many lives in his 53 years on this planet. His many and varying interests and hobbies have allowed his light to touch the lives of so many, as evident by the event. His ‘health overhaul’ (8 or so years ago) is what has most inspired me. A healthy diet and increased exercise soon had him, a man who once could barely walk due to back surgeries, participating in a local triathlon. He brought life to the thought that “you don’t always have to be who you were.”

Unc and Nicole at the start of their annual Turkey Trot race.

Unc and Nicole at the start of their annual Thanksgiving day race.

Four years ago I fed off this determination, and found some of my own, following his lead and transforming my lifestyle. Soon we were running my first 8K race together, in 18 degree weather, to help raise money for a local food pantry. A year and a half later Mother Nature provided a 98 degree day and another chance to run with Unc in a charity race. It was that stifling July day, when trying to match his pace left me sick and gasping for air, when he said such simple words that gave me strength.

“Just breathe, Nic…just breathe”

So now I plan to continue his giving spirit, and his healthy lifestyle, by presenting the Just Breathe Virtual 5K/10K in his honor. The virtual run allows anyone and everyone, no matter where they are, to participate and offer support to Unc and all those fighting this battle. All registration proceeds benefit Lung Cancer Alliance, an organization that has already helped our family in so many ways and will no doubt continue that trend. Also, in keeping with our love of extremes, when the race hits its first 200 registrants, I will be shaving my head in honor of all those who continue to battle this horrendous disease.

It was at his benefit, surrounded by twice as many people as expected, and twice the love, that I saw just how far reaching Unc’s light shines. He may not have had the ability to attend the event, fighting yet another infection, but his presence was felt by all those who were there. While every day is a new struggle, it is the future that Unc looks forward to the most. Spending time with his five granddaughters, the run in April, and most importantly the birth of his first grandson in June. May his own words give him the strength to do so.

Just breathe, Unc…just breathe.

Learn more about the Just Breathe Virtual 5K/10K on April 9th and how to get involved in the fight against lung cancer today!

Get to Know Our New Director of Philanthropy

 

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Kristin Bramell, Lung Cancer Alliance’s Director of Philanthropy

We are thrilled to welcome Kristin Bramell to our LCA family as our new Director of Philanthropy. Kristin works with those individuals who are interested in saving lives and leaving a legacy through financial support.

She brings with her over a decade of experience in non-profit development work, the majority at The Nature Conservancy. We sat down with Kristin to find out why she chose to bring her talents to LCA and what she hopes to achieve.

Why LCA? Why lung cancer?
Everyone is affected by cancer at some point in their lives, whether a loved one or friend, but I became overwhelmed in learning about the statistics surrounding lung cancer particularly. I couldn’t believe that a disease killing 160,000 people each year received such little funding and was often overlooked in the public eye. As I talked to my peers about working at LCA, I heard story after story of loved ones lost to this disease and I realized that working for such a reputable organization in the fight against lung cancer was where I wanted to be.

What has stood out to you about LCA since starting in February?
Since starting this role and meeting the people behind the organization, I am so driven by the clear mission and tireless efforts of the staff and volunteers. They truly “walk the walk”—and are 100% dedicated to supporting the lung cancer community in thought and action.

What impact do you hope to have on the lung cancer community?
Of course, we are all working towards the vision to triple survivorship by 2020.  It is such a compelling impact statement and I am excited to be a part of that movement. I look forward to connecting with our community and using my skills to directly help those who need it most.

Additionally, I was moved to learn of the increasing risk of lung cancer in our veterans and I hope to help positively impact that community.

The Nature Conservancy and LCA are pretty different. What did you learn there that you can apply here?  While changing roles from a group like The Nature Conservancy to Lung Cancer Alliance might seem drastically different, there is a tremendous tie between the environment in which we live and our health. I am hopeful that cities worldwide will one day realize this connection because of LCA’s efforts and successes here in the U.S.

Learn more about Kristin and her work with LCA here or email her at KBramell@lungcanceralliance.org

A Message from Lung Cancer Caucus Co-Chair, Congresswoman Capps

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Congressional Lung Cancer Caucus Co-Chair, Representative Lois Capps (CA)

By Representative Lois Capps (CA)

I pen this post with a great sense of optimism for what we, as a nation, can achieve in our fight against cancer. As co-Chair of the House Cancer Caucus I have seen the evolving impact of cancer on our nation over the years. Today lung cancer is the second most commonly diagnosed cancer in both men and women—claiming far too many lives in each community, neighborhood, and family—including my own.  In the spirit of solidarity and with a great sense of purpose, I joined my colleagues Congressman Rick Nolan (D-MN) and Congressman Frank LoBiondo (R-NJ) in establishing the Congressional Lung Cancer Caucus last year to bring particular attention to the disease.

It is our mission as a bipartisan caucus to serve as a clearinghouse of information for our colleagues on Capitol Hill as they seek to understand the issues surrounding those who are living with and those who are at risk for lung cancer. We aim to eliminate the stigma often associated with lung cancer and highlight the many populations who are at increased risk for this diagnosis, including service members and veterans. And we seek to draw attention to the importance of lung cancer research, screening, and treatments to improve survivorship.

We are at a crossroads in our nation’s fight against cancer. The President’s “Moonshot to End Cancer” includes unprecedented levels of funding to promote advancement in cancer research and therapeutic development. This builds on the progress that dedicated lawmakers have made over the years to advocate for funding to cure all types of cancer. For years, my fellow co-chairs and I have been working to ease the struggles that cancer patients and their families face during the treatment process. In 2007, the House passed my resolution that called on the President to declare lung cancer a public health priority and encourage greater investment in research. And my bipartisan bill, the Planning Actively for Cancer Treatment (PACT) Act, continues to gain the support of providers and advocates across the country who support this effort to fill many of the gaps in cancer care by helping patients access a written treatment roadmap, developed in consultation with their health care providers, to encourage coordinated cancer care and symptom management.

Combating lung cancer requires us as a nation to use all the tools in our arsenal. It requires us as members of Congress to help the scientific community build on the strides they have made so far by ensuring they have the resources to continue making progress. It requires us to strengthen the cancer care system by providing support for cancer patients and their families as they navigate their care. And it requires treatments to be affordable and accessible. Countless families are relying on us, and it is my belief that by working together, we can change the fate of individuals diagnosed with this devastating disease.

Join me and my fellow co-chairs of the Congressional Lung Cancer Caucus for an educational briefing on Capitol Hill Wednesday, March 2 to discuss the impact of stigma on public health policy. Learn more here.