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National Advocate Advisory Council

Established in 2012, the National Advocate Advisory Council is an assembly of leading advocates from across the country recognized for their outstanding commitment to our mission, our community and our vision of reducing lung cancer’s mortality by 50% by 2020. The council provides leadership, input and action on key issues that affect the lung cancer community to improve outcomes and save lives.

Members

Nancy Alvey

Nancy Alvey

I am a native of Madison WI, having moved to the Louisville KY area in 1981 from Chicago, Illinois.

In November of 2005, I was diagnosed with stage II lung cancer in the upper right lobe. Surgery was performed in December 2005 to remove the upper right lobe and various lymph nodes.  Four rounds of chemo, many x-rays, CT scans and doctor visits later, I have remained cancer free six years later.

When a Lung Cancer Alliance chapter was being formed in Kentucky/Southern Indiana back in May of 2009, I joined in as a Co-Chair along with Colette McCoy and Dr. Goetz Kloecker.

My husband, Sam & I remain active in KY/SoIN and DC advocating for the Lung Cancer Mortality Reduction Act.  A piece of legislation aimed at getting more money thru government to work on research and finding a cure for lung cancer. Big strides are being made. I feel that  “cancer is cancer” and lung cancer deserves as much funding as many other cancers. With a restructure of Lung Cancer Alliance, I will now join a National Advocate Advisory Council of long term survivors.

   
   
Kathleen Houlihan

Kathleen Houlihan

Originally from Texas, I spent twenty years teaching linguistics at the University of Minnesota before moving to New Mexico in 1991 with my husband Jonathan Holt Truex.  I had quit smoking shortly before the move.  In July of 1998, I developed a pain under my left shoulder blade.  My doctor and I agreed it was a pulled muscle from pruning overhead tree branches.  When the pain didn’t go away, I resisted advice to get an X-ray. 

Why should I get an X-ray for a muscle problem?  I finally had the X-ray seven months later, when I started coughing up blood.  I had an inoperable 7 x 8 cm tumor at the top of my left lung, adenocarcinoma, Stage IIIB. 

I thought I was dead.  But by the grace of God, I had a complete recovery.  My treatment consisted of chemo and radiation, along with a healthy diet, nutritional supplements, exercise, lots of prayer, and lots of love and support from Holt and family and friends.  Thirteen months after my diagnosis, the tumor had shrunk away to a scar. 

To celebrate the recovery of my health, I began taking singing and watercolor classes, and I became more active in my church.   Holt and I came to appreciate each other even more and continued walking dogs and going on hiking trips in Utah as often as we could get away.  My life was much richer than it had been before my cancer diagnosis.

Then in the summer of 2009, during the course of an annual cancer check up, I was found to have a new 1.6 cm lung nodule in my lower right lung, also adenocarcinoma, also inoperable (due to location), Stage IA.  It was considered to be a new primary lung cancer (because it was ten years after the first one and in the opposite lung), and that allowed me to be treated with curative intent.

I had much the same treatment as I had the first time, and by the grace of God I had another complete recovery.  My life is just about as full and active as before.  Holt and I are still walking dogs and hiking in Utah, and I am continuing the volunteer work I do with cancer patients through four different organizations, including the Lung Cancer Alliance.
   
Cecilia Izzo

Cecilia Izzo

I am an eight year (and counting) lung cancer survivor. As a volunteer for Lung Cancer Alliance, I am a regular visitor to both the state capitol in Olympia and that "other" Washington, meeting with local and national leaders to advocate for lung cancer awareness and garner support for the Lung Cancer Mortality Reduction Act.  In 2010 and 2011, I successfully organized and coordinated the first Shine a Light on Lung Cancer vigils in Washington State, and in 2006 was instrumental in getting Washington’s Initiative 901 -- the statewide ban on smoking in public establishments -- on the ballot, where it passed by overwhelming majority.

Despite three major surgeries -- including a pnuemonectomy in 2004 -- I enjoy an active lifestyle.  In addition to regularly walking and biking, I’ve participated in numerous half-marathons, hiked through the Costa Rican jungle, snorkeled the Great Barrier Reef, camped on Mt. Rainier, rowed for a dragon boating team, and -- while undergoing chemotherapy -- traveled to England to see my favorite musical artist Van Morrison in concert.

I hold a BSN from Columbia University, an MSEd in Exercise Physiology from Queens College, and am a Certified Diabetes Educator.  I currently work in the Pediatric Endocrine Department at Seattle Children's Hospital.  Born in Kansas City, Missouri, I’ve lived in Colorado, Kansas, New York, New Jersey, and Boston, but consider Seattle, where I have resided for 14 years, my true home.  I share my life with my two precious daughters -- Rachel, soon to graduate Seattle University, and Natalie, a freshman at Macalester College in St. Paul -- and my husband of 25 years, Jeffrey, an Assistant Professor at the University of Memphis.

   
Diane Legg

Diane Legg

I am from Amesbury, MA, married and the mother of three boys

In the spring of 2004, a family friend, Susan Levinksy, a non-smoker, 43 years old and mother of 3, was diagnosed with stage IIIB lung cancer.  I was shocked and thought it was a fluke as I had never heard of a nonsmoker getting lung cancer. I was completely ignorant to how prevalent this disease was and how dismal the survival rates were. So in October of the same year, at the age of 42, I was taken aback when I too was diagnosed with lung cancer, Stage I, non-small cell lung cancer. 

We found my lung cancer purely by chance when I pulled a back muscle picking up my thenone year old son and a CT scan was ordered to rule out a pulmonary embolism.  An active, otherwise healthy mother of three, I had never considered myself at risk for lung cancer. I had a lobectomy, where my upper lobe of my left lung was removed, followed by 3 months of adjuvant chemo. In 2006, my lung cancer reoccurred and is now in both of my lungs.  Although I am stage IV, I consider myself incredibly blessed.

In January 2005, while I was going through my second round of chemo, Susan died. It was a mere nine months after she was diagnosed.  I was devastated.  Having learned much more about the disease and its impact during my treatment and recovery, I was determined to be the voice for Susan and for others that had succumbed to this disease.  I was determined to educate others and raise awareness of the disease.

Lung Cancer Alliance’s mission resonated with me; patient support, awareness & changing health care policy.  I became Co-Chair of the Massachusetts Chapter of Lung Cancer Alliance, which has recently become the New England Chapter.  In 2006, I started Shine a Light on Lung Cancer Vigil in Boston to honor and remember those who have been touched by the disease and to raise awareness.  Last year there were 83 vigils in 33 states and in two countries to Shine a Light on Lung Cancer and bring it out of the shadows.

Lung cancer can be a very lonely disease due to the stigma it carries.  After being diagnosed with lung cancer and learning the statistics, I was stunned by the lack of research that had been done, the lack of progress relative to screening and survival rates, and the lack of understanding by the general public, medical community, and government about the disease itself.  I am committed to speaking out about the devastation that lung cancer is having on our families today and to raising awareness in order to change the face of this disease. 

   
Ed Levitt

Ed Levitt

I was born in England, immigrated to Canada at age twelve and became an American citizen at age 36. My working career included two fortune fifteen companies where I spent almost 30 years in international merchandising/marketing and as a business motivational speaker.

I retired in 2004 after my diagnosis of stage 4 non-small cell lung cancer. I was given a few weeks to live and was told to get my affairs in order and make my final arrangements. After three rounds of chemotherapy that failed to control my cancer I was put on a biologic drug just fast tracked by the FDA and given radiation.

To my oncologists surprise the drug worked and within a matter of weeks my lung cancer all but disappeared. I am still being successfully treated with the same drug today, eight years later. I have had a few small recurrences which have been treated with surgery or radiation. Four years after my lung cancer diagnosis I was diagnosed with stage III bladder cancer which was successfully treated with surgery and chemotherapy. I continue to live a normal life by positive thinking and keeping busy with things that matter.

In 2005 I started a lung cancer group in Georgia with my wife Linda, to make a difference for those diagnosed with lung cancer. Lung cancer is so ignored and stigmatized. In order to make a real difference our lung cancer group needed to be part of a national group so we joined LCA and became a Chapter. I chose LCA because their mission to get federal research funding directed to lung cancer commensurate to its public health impact and to address it with a comprehensive program addressing all aspects of the disease is also my goal.

 What keeps me going?  Tenacity, attitude, fighting to make a difference for lung cancer, learning all I can about my disease, not sitting at home feeling sorry for myself. My story has been featured in three books, one in Australia. I have had stories in many magazines and newspapers and have been interviewed on television and radio.

   
Gail Matthews

Gail Matthews

In October 2000, we were in Aspen, Colorado visiting friends. From there, we flew to the Cooper Clinic in Dallas for an EBT heart scan. I did not want the test as it was uncovered by our health insurance however my husband signed me up anyway.  The radiologist read our scans. Our arteries were clear! However, they saw a spot on my right lung. 

The radiologist suggested I return home immediately and see a doctor. He thought it could be an infection, something else or lung cancer.  I was aghast. As a never smoker with little exposure to secondhand smoke and absolutely no symptoms, lung cancer was not something I could get.  How wrong I was. 

After the blood tests and a needle biopsy came back negative, I went for a second and third opinion because the CT PET scans still showed something on my lung. I opted for exploratory surgery. In early December 2000, Dr. Christina Williamson at the Lahey Clinic removed my lower right lobe and some lymph nodes. I was diagnosed with Stage I brochioalveolar carcinoma. After surgery, I was deemed cancer free with no need for chemo or radiation.

In 2002, a routine chest x-ray showed another spot on the left lung.  This time I was put through more tests which all came back negative except for the x-ray and the CT scan.  So after more opinions and more tests, an operation was scheduled for January 2003. Dr. Williamson removed my lower left lobe. It was the same cancer. Again I was cleared with no extra treatment. All that was required was a yearly CT scan.

I was back with my horses, riding a bike, living a normal life with the exception of being in crowds or flying for 6 years.  I felt blessed and once the pain from the ordeal subsided, decided to help the only national organization dealing with lung cancer at the time, Lung Cancer Alliance. I wanted to bring lung cancer out of the closet, especially the stigma.  In November of 2005, I announced we were throwing a Crystal Ball in Boston. We wanted to raise awareness in an elegant way while honoring the work of seven prominent doctors in the Boston area. We brought a lot of people together and I feel launched a movement in New England.

Fast forward to 2008, my healthy husband who exercises regularly, eats healthily and always used his brain was diagnosed with early onset Alzheimer’s. We are still able to maintain a quality life, however, the disease is progressive and I am now a full time caregiver with little time for anything else. 

And while lung cancer is horrible, from what I have seen with Alzheimer’s, watching a vital, brilliant and good person fade......it is really horrible.  At least if you get lung cancer early, you have a chance and that is why the Give A Scan program with LCA is vital to saving lives......just as the mammogram is for early detection of breast cancer.  We are grateful for all LCA does to fight this lethal cancer.   

   

Rich Monopoli

The day before the birth of our first baby, my wife Sara Thomas Monopoli was diagnosed with advanced staged, inoperable, lung cancer. She was 35 years old, never smoked, and was in otherwise perfect health. Our daughter Vivian was born on June 19, 2007 and the next day, we began our battle. Sara lost her fight with lung cancer. She passed away eight months later.

As a new parent and widower I was angry and scared. How could this happen to a young, never-smoker? Why were there no symptoms? I scoured the internet and only LCA provided answers. I joined forces with Diane Legg in 2008 and continued in the battle that took Sara’s life. 

Diane and our New England committee leveraged resources available to us to elevate Diane’s Shine a Light vigil to an annual flagship event in Boston and help to export Shine a Light to the world. The most empowering work for me is the political advocacy. Through the years I’ve met with legislators on the State and Federal level to advocate for an early screening protocol, general awareness, and additional research dollars. It is truly empowering to engage in this in this LCA community of advocates and survivors. It has helped me heal and I’m so proud of all that we have accomplished.

   
Randy Urmstrom

Randy Urmston

I have practiced law in Seattle as of Counsel to Hendricks & Lewis since 1990 and previously worked in legal and engineering positions in the energy, environmental and waste management sectors.

I connected with Lung Cancer Alliance (“LCA”) through its predecessor Alliance for Lung Cancer Advocacy Support and Education (“ALCASE”) in 1997 when I was diagnosed with stage IV lung cancer.  Through ALCASE, I learned more about lung cancer, gained support from others and participated in medical conferences.  Peggy McCarthy, ALCASE founder, was a driving force.  Through Peggy’s vision and that of  Sheila Ross and the leadership of  Laurie Fenton Ambrose and current staff, ALCASE, now LCA, makes a real difference in the prospects for lung cancer patients.  I was President of the ALCASE board during a fragile, but important transition from the West to the East Coast. In recent years I have welcomed the opportunity to be a phone buddy with patients, who are where I was not too long ago.

My children, who in 1997 were amused by my bald head, are now in college.  And my wife Eliza Davidson, who was also an effective advocate in the medical world, is an architect, landscape designer, arborist and on the board of the National Association of Olmsted Parks.

I spend any extra time on Israel/Palestine issues through St. Mark’s Cathedral in Seattle.  Like many others I fell in love with the Northwest when temporarily stationed at Fort Lewis in 1970 and subsequently moved permanently to Seattle from Delaware, having graduated from V.M.I.  and U. VA Law in 66 and 69, respectively.

   
 Ken and Sheila

Ken Wheatley

Six months after Sheila and I got engaged in Montreal in 2007, she was diagnosed with stage 4 non-small cell lung cancer. They gave her 9 months to live. We got married anyway in Point Loma, California in June of 2008, and she passed away 15 months later on September 15, 2009 - three days after her 52nd birthday. She had been too sick to go on our New Zealand/Australia honeymoon. It’s still on my bucket list.

Other than my daughter, Tammy, I’ve never adored another person in my life. Sheila was the most perfect woman, friend, and partner a person could ever hope to have in their life. She ran her own company for 26 years with 400 clients and 22 employees. In 2004 she was recognized as the Woman Business Owner of the Year for San Diego by the National Association of Women Business Owners. She was brilliant, adventurous, athletic, incredibly beautiful inside and out, loving, caring, and a very gentle, tender soul. She was my Princess Di. I miss her, every day.

She never smoked, nor have I, so the diagnosis and prognosis stunned and crushed us. The stigma we dealt with throughout her 22 month ordeal only added to the weight of the situation.

A few months before she passed, I was diagnosed with an aggressive prostate cancer, but by comparison, I had a much different experience. Early-enough detection, no stigma, and a clear-cut set of options to eradicate my disease. I want the same for lung cancer patients. We need the same for lung cancer patients and those at risk of the disease.

So, after learning about the abysmal research funding levels and lack of awareness about the disease, I got involved as the Co-Director for the LCA California Chapter in 2012 and helped lead the effort to get lung cancer included in the 5 year Comprehensive Cancer Control Plan for the first time in its 15 year history. I led the team that wrote the lung cancer portion of the Plan, and now lead the implementation team. I also speak at health fairs, and basically any place that will have me, to get the message out about lung cancer and the support services the Lung Cancer Alliance provides to patients and their caregivers.

I retired from Sony Electronics as a Senior Vice President in 2014, after 24 years. Before that I was an FBI Special Agent. I have a BA from Florida International University, and an MA (summa cum laude) from Webster University, with additional senior executive education with Northwestern University/Kellogg School of Management; Harvard JFK School of Government; and the University of Michigan Business School.

I was born in Brooklyn, NY, left when I joined the Air Force, and have lived in Texas, Mississippi, Germany, Florida, Massachusetts, and, for the last 28 years, San Diego, California - a true paradise. Through Sony, I was fortunate to get a more global perspective of life by traveling and working around the world in Spain, Finland, the UK, Singapore, Malaysia, Japan, China, various parts of Latin America, Italy, Canada, Greece, etc., quite often with Sheila, my favorite traveling buddy. I have well over 2 million air miles at this point.

I really enjoy racquetball and mountain biking. Golf, not so much.

   
 Jenny White

Jenny White

I was born and raised in Evansville, IN. I moved to Nashville, TN to finish my college education at Belmont University. I loved Nashville and decided to stay after graduation. My husband Kent and I share our hearts and home here with our cat children.

In December 2010, I gassed myself cleaning our home bathroom with a noxious combination of bleach and ammonia. The exposure sent me coughing and wheezing to my doctor’s office. Upon hearing my cough, he ordered a chest X-ray to determine if I’d given myself chemically-induced pneumonia!

Well, I didn’t have pneumonia but the radiologist noticed a little something in the right upper lobe of my lung. A PET scan was negative so we planned to “watch” the nodule over 2 years with a series of low dose CT scan. If at the end of 2 years, the nodule doesn’t grow, then it was something I breathed in that had calcified and showed up on that chest X-ray.

I had a baseline CT in December with first follow up in March 2010. No change! Next follow up was September 2010. No ch… no wait, it had grown by 30%.

Since it was growing, we needed to find out what it was. On October 5th, 2010, I had VATS surgery and I heard the words, “You HAD lung cancer”. I HAD lung cancer because with the removal of my right upper lobe during surgery, I remain lung cancer free!! Five and half years and counting!

Officially my diagnosis was stage 1A non-small cell adenocarcinoma. Mutation marker testing revealed it was EGFR gene mutation positive. I took the target oral chemo, Tarceva, for the next 6 months.

As I learned more about lung cancer, I realized how fortunate (lucky, grateful, blessed) I was to have had my lung cancer diagnosed early. I knew I had to use my voice to advocate, educate and make a difference in the lives’ of other lung cancer survivors.

I joined the Tennessee Cancer Coalition as state resource director for lung cancer and contributed the first ever lung cancer chapter in the Tennessee Comprehensive Cancer Control Plan. About that same time, I partnered with Lung Cancer Alliance and brought the first Shine a Light on Lung Cancer to Nashville and to Tennessee as we'll as establishing LCA - TN Chapter. I’ve participated in three Lung Cancer Alliance Summits and have loved calling on my representatives in Congress and asking for their support in ending lung cancer.

My goal has always been to build a compassionate lung cancer community and bring survivors together for support. I am thrilled to say we now have a lung cancer support group that meets bi-monthly at Gilda’s Club of Nashville

In the past year, you might have seen me on a billboard, a bus and a bus bench around town. I am the face of “Dear Cancer, You Lose” for St. Thomas Health’s “Nothing Shall Be Impossible” campaign.

It is my honor to serve on the National Advocate Advisory Council for Lung Cancer Alliance.

 

In Memoria

We honor the life and memory of council members who are no longer with us. 

Phyllis Goldstein

 

Phyllis Goldstein  
   

Mike Stevens

Mike Stevens