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Found 12 results

  1. I was diagnosed with Stage IV Lung Cancer on September 19, 2016. The doctor told us that it was inoperable and radiation was not an option. It felt as though I’d been punched in the stomach. I immediately began thinking of my children and my wife, Lisa, and that my time here on Earth was very limited. I had no words that day, only utter despair. As the initial shock wore off, and the option of getting selected for a trial medication was offered, I realized that I may have a chance at fighting cancer and not letting cancer "fight" me. I’m ALK positive, so I was able to start taking a targeted therapy drug. It was shortly after the diagnosis and when I had no choice but to accept this as my fate, that I made the decision to fight this disease by becoming proactive in my care. I have always been a man of strong faith, and God has not failed me yet. Sometimes it takes something so big to appreciate waking up each day to your family and the people you love! I pray to God every night to give me another day. I was looking for an organization that focused on spreading awareness about lung cancer and funding research. I also liked that LUNGevity provided so many different types of support. We created a team for Breathe Deep Boca Raton, a 5K walk and run that raised lung cancer awareness and funds for LUNGevity for research and support programs. My wife and I are very active in our community, so we started reaching out to people to encourage them to come out and support the event. We advertised in local restaurants and reached out to local schools and youth recreation programs, and got some things going. My kids and I used social media to spread the word and I followed up with phone calls to remind people to show up. A friend of mine is in a band, so we asked them to come out and play live music at the event. Parts of the event are more somber, when we’re honoring the people we’ve lost to this disease, but other parts are uplifting and hopeful when we talk about research and the progress being made. I think the impact in the community is two-fold. First, it helps to raise awareness about lung cancer. I felt so strongly about making sure people realize that lung cancer isn’t only for smoker. And it also brings awareness about LUNGevity and that this a specific organization to help people impacted by lung cancer. I’m grateful for the research and medication and for the support of my family, friends, and the community. I hope the fundraising goes toward research to help find more targeted therapies. We need to fund research for treatment options that increase survival rates and help contain and manage the disease. I’m ALK positive, and there are treatments for that specific mutation, but I’d like them to find treatments for other mutations as well. I still look at the glass half full, because today, I am still here. My loving wife and children stand with me every day in this long, tedious, sometimes unbearable cancer journey. Through my positive energy and prayers we stay strong, and in September 2017, we celebrated my one-year cancerversary!
  2. I first became involved with LUNGevity through National HOPE Summit, a survivorship conference in Washington, D.C. Seeing so many survivors and being able to share our stories and gain knowledge made the experience very special. I’m always impressed by the quality of what I learn and what is shared. The fact that the medical researchers can interact with patients in an intimate setting and participate in the roundtable discussions is very inspiring. Going to HOPE Summit has been a springboard for many other volunteer and advocacy opportunities. At my first conference, I learned about the LifeLine peer-to-peer support program. As a long-term survivor, I wanted to use my story to try to inspire hope in others who were living with lung cancer, so I jumped at the chance to give back as a mentor. Through HOPE Summit, I also got to know Andrea Ferris, LUNGevity’s President, and Katie Brown, LUNGevity’s Vice President of Support & Survivorship. Katie recommended me as a reviewer for the Department of Defense research grant program and I love being part of that. LUNGevity also connected me with Eli Lilly & Co. who produced an Emmy-winning documentary about my family and me. I've attended a congressional luncheon on Capitol Hill with LUNGevity, and a lab tour at Lilly. I was looking for ways to give back in my local community, so a few years ago I started a support group in Fort Myers, Florida. The group provides wonderful camaraderie and community. We meet once a month to share stories and experiences and resources, and we also get together socially once a month. We’re a close-knit group. In 2017, I convinced four members of my lung cancer support group to attend National HOPE Summit with me. We were so inspired that we decided to organize a Breathe Deep event in Fort Myers to raise awareness about the facts of lung cancer. We were able to share our story in local media and even surpassed our fundraising goal. We held the 5K walk and fun run on November 4 to kick off Lung Cancer Awareness Month. Breathe Deep Fort Myers brings attention to lung cancer and the lack of funding and gives us the opportunity to get rid of the stigma. We want to let the people in our area know that you don’t have to smoke to get lung cancer, that two out of three of the people diagnosed are never-smokers or quit many years ago. Being an event coordinator gives me such a feeling of purpose. I’ve been so aimless since I retired from teaching because of my health. Helping others through this event and through the support group is very rewarding. Our number one goal is to provide much needed research funding. We also want to raise money for patient education and support, and help continue to bring top-notch speakers to HOPE Summits. I hope that both the walk and the support group continue to grow and make an impact in the community. LUNGevity is so patient-oriented and offers so much support and information and education that it aligns with my goals. I want to give back to LUNGevity because I feel like they’ve given a lot to all of us. That makes me want to do as much as I can to help support LUNGevity’s mission to improve quality of life and survivorship. Melissa (bottom right) with members of the Fort Myers Lung Cancer Support Group and their families at the 2017 National HOPE Summit.
  3. How does one find joy in lung cancer? I find some of mine by celebrating survival, and there is no better way than to attend a LUNGevity sponsored Breathe Deep event. Our's was a pleasant but breezy fall Texas day and about a hundred of us showed up to the celebratory walk-jog-run event. Our pleasant jaunt around the Arlington Texas park also raised thousands of dollars to undertake LUNGevity focused research for new diagnostic and treatment methods for lung cancer. But, while fund raising is vital, celebrating survival is even more important. When we meet and walk together, we become a powerful symbol of hope. We become energized. We find a moment of joy. Forum moderator Susan Cornett and I met each other for the first time at today's event. We've been internet connected for nearly 2 years but our in person meeting was a wonderful experience. We talked about vacations taken and planned, survivor memories, and shared life experiences. I took this photo of Susan with her mom and dad who turned out to help Susan celebrate life after lung cancer. We had a grand time. Stay the course. Tom
  4. LaurenH

    Kara Capasso

    When my dad, Fred Gontarek, was diagnosed with lung cancer, I felt lost. I wasn’t sure where to turn. I searched the internet as most people do to see what support was out there and what was being done to raise funds for research. Sadly, there were not many local organizations or funds being raised for lung cancer. I vowed to try to change that. I found the Breathe Deep Philadelphia Event was coming up in the Fall of 2011 and knew we needed to be there for Dad and with Dad. Team Fred started in April 2011 with the motto “No One Fights Alone” to show my dad how many supporters he had and to give him hope during his battle with lung cancer. Fred fought as hard as he could until he passed away on April 28, 2012. The motto was then changed to “Never Forget” since our memories of him and what he meant to us continues to live on. Team Fred first walked in 2011 with Fred by our side and today we still walk in his memory as he watches over us. I first formed a team for Breathe Deep Philadelphia in 2011 and have continued to volunteer each year after that. This year it is an honor for me to be the event coordinator for Breathe Deep Philadelphia. The Breathe Deep events program provides knowledge and support during a difficult time. These events give friends and loved ones a chance to gather together to not only raise funds but raise awareness and offer their support. The most rewarding part of being a Breathe Deep event coordinator is knowing that I have a part in raising the funds necessary for critical lung cancer research. My dad was a man who would do anything for anyone and I know that if he were here today he would be right by my side helping in any way he could. My focus is keeping his memory alive while hoping to positively change the lives of others. I hope my fundraising efforts will support life-saving research that is necessary so that one day we can live in a world where no one dies from lung cancer. Kara (right) and Team Fred at Breathe Deep Philadelphia Kara and Fred dancing at her wedding
  5. By: Deborah R. Burns “Everybody can be great. Because anybody can serve. You only need a heart full of grace, A soul generated by love.” - Dr. Martin Luther King, Jr. Charlotte Jamison is many things: a Christian, a mother, a teacher, a friend, and a volunteer. Over the past two years, Charlotte has volunteered her time and talents to assist in the efforts of the LUNGevity Foundation’s Annual Breathe Deep DC 5K Walk. Charlotte serves as the backbone and chief fundraiser for Team Open Technology Group: (OTG) United for A Cure. Charlotte and my family have been friends longer than I can remember. She and my husband Leon had a special relationship. I still remember how they would often laugh together, share experiences, and enjoy working together on church projects. After my husband was diagnosed with lung cancer, she was the key person who supported me and walked me through that unforgettable journey. Since my husband’s death in 2011, she continues to be a huge inspiration in my healing. A member of New Canaan Baptist Church in Washington, DC. (Gregory M. Sims, Pastor), Charlotte has engaged the entire congregation in being part of this important cancer-fighting effort. She sets up a beautifully decorated table each year to receive donations and to recruit walkers for the OTG Team. She and her helpers work tirelessly documenting information, promoting the cause, and speaking to individuals about the walk. On the day of the walk she always arrives with a smile and eager to help. She immediately begins handing out goodie bags, gathering our Team and rallying “Team Spirit”. Many of the volunteers from other teams admire her enthusiasm and dedication for the cause. She inspires through example. I can never thank her enough for all that she brings to our Team and fighting this disease that claims thousands of lives each year. Did I mention that she’s 80 years young! God strengthens her to do His work. She often says “As long as the good Lord enables me to work, I’m going to work.” Open Technology Group’s cup runneths over for having Charlotte Jamison serve as a volunteer for OTG: United For A Cure. We are truly blessed by having her.
  6. It came as quite a surprise when I was first diagnosed with Stage 3 lung cancer in 2007. It was an even bigger shock to learn that my lung cancer was caused by exposure to high levels of radon gas in my own home. I want to keep sharing my story with the hope that it might prevent others from getting lung cancer from radon gas. My husband and I did extensive renovations on our house to turn it into our dream home. About five years later, I developed a nagging cough. I went to the doctor, who sent me for a CT scan. The scan showed a mass in my right lung, so we scheduled an appointment with a pulmonologist to have a biopsy. The doctor who performed the biopsy called to tell me that I had lung cancer and that it was inoperable. He told me that I had four months to live. My husband had just returned from a trip to Africa and my mother was staying with us while she recovered from surgery. I turned on the T.V. and Jordin Sparks was singing, “This is My Now” and it just hit me that “you can sit here and feel sorry for yourself or you can fight it.” It’s crazy how the universe works. Shortly after I was diagnosed, we had our home tested for radon gas, the second leading cause of lung cancer. The test showed levels that were 6-times the EPA recommended action level. I had my right lung removed and underwent 5 weeks of radiation and 4 months of chemotherapy. I started to gain my strength back and started looking for a lung cancer community. In the beginning, there was very little information about lung cancer. I couldn’t find anyone to talk to. Then my daughter found out about LUNGevity and a walk they were holding in Manhatten Beach, California, called Breathe Deep Los Angeles. She said we should go there on a girls’ trip. Who wouldn't want to go to the beach after dealing with lung cancer treatment? My first Breathe Deep experience was so inspirational. There were over 350 people walking whose lives had somehow been touched by lung cancer. I’d never been to anything like that and there was nothing like that where I lived near Salt Lake City. When we got home, my other daughter said, “Why don’t we start one here?” So we held our first Breathe Deep Salt Lake City in 2012. I remained cancer free for 6 years, then in 2014 they found a fist-sized tumor in the front of my brain and a smaller tumor in the back which was metastasized lung cancer. They were able to remove those tumors and I went back into remission until that December, when they found 6 more brain tumors. I underwent surgeries to remove those, and then in January 2015, I started on a new chemo pill that I take orally. This treatment has worked very well for me and now there are four more on the market that would work just as well or better if this one stopped working. This is why I am so passionate to raise funds for lung cancer research. I am living proof that it works. The new treatments are so effective and amazing, but researchers need funding to find a cure. Lung Cancer research receives the least amount of federal funding of all types of cancer, yet it is the deadliest. I feel it is so important to raise funds to improve outcomes for lung cancer patients. I think the most rewarding thing about being a Breathe Deep event coordinator is to see people coming back year after year because they know it’s a good cause. It makes you realize how many people care about health and our lungs. The more people you talk to, the more you find that they have a connection to lung cancer, whether it’s a family member or friend. In addition to raising funds and awareness, we try to provide information at our event. We have speakers who talk about new discoveries in lung cancer treatment and radon. In fact, just because we’ve been raising awareness, a lot of the real estate agents are on board with getting homes they sell tested for radon gas. A local organization that does radon testing is even donating $20 of every radon test they do to LUNGevity. They’re promoting the walk to all of the real estate agencies that they work with. It’s amazing how generous people are. At first, I thought I can’t go around asking for free stuff. But I’ve found that people are willing to help! I really feel like the grassroots is the way to reach people. I’ve had more success talking to people one-on-one. We’ve done some women’s groups and I’ve spoken at classes on Radon. I also worked with a social worker to put together a lung cancer support group. The online groups are great, but sometimes, you just really need to talk so somebody in person. In addition to LUNGevity, I’ve also been doing a lot with the Utah Radon coalition. And I’m going to be speaking at the international radon convention in New Orleans in October. I want to show that there’s a face to lung cancer caused by radon gas. If it can happen to me, it can happen to anyone. Preventing lung cancer is so much easier and less costly than treating lung cancer.
  7. Hello there …. my name is Alisa Brenes and I am a 16-year Stage 3 lung cancer survivor. I guess you can say my lung cancer journey started before I was born. My mom, my maternal grandfather and many of his siblings all died of lung cancer. I am motivated to do my part to end our family history now. I have been a lung cancer advocate for over ten years, most of my work behind the scenes, but little by little I’m coming out and sharing my story. I hope to follow this introduction with more blogs, sharing hope and spreading awareness. I was diagnosed in July of 2000, just a few months after my mom passed away from lung cancer. It still boggles my mind that I was taking care of my mother while the same cancer was growing inside my lung. I had a third of my lung removed and followed up with chemotherapy. I am a single mother of twin boys who were 10 years old at the time. They were in fourth grade and I didn’t even know if I would be there for their elementary school graduation. Thanks to God and my amazing doctors, I lived to see my twins graduate from college. My next goal is to see them happily employed I was diagnosed before social media and message boards were around, the world wide web was fairly new and there wasn’t even google yet. I felt lost and had never met another lung cancer survivor. Within a few months the internet started becoming more popular and all that changed. Somehow (thank you Universe!) I found Katie Brown’s original message board and through that I not only connected with other Survivors, but I was introduced to the first Walk for a Cure (now called Breathe Deep NYC) and have been volunteering ever since. And if that wasn’t enough to keep me hopeful and connected (and it was …) I was introduced by Katie and LUNGevity to Hope Summit! If anyone wants to know what it is like to be in a room with hundreds of survivors (but no one ever gets lost in the crowd, somehow we end up like one big family) just come to Hope Summit. The energy is amazing and you leave the Summit with life-changing knowledge, friendships and Hope. This is not a journey I chose or one that I would wish on others, but the truth is I've grown so much through this and have such an appreciation of every day and the friends I now call family that I've met through lung cancer have enriched my life beyond words! As strange as it might sound to some, I can actually say that my cancer diagnosis brought me many blessings. It is my desire to share hope and friendship with other survivors and help spread awareness so one day we will live in a world where no one dies of lung cancer.
  8. Back in 2009, my mother-in-law, Sue Fosco, was diagnosed with lung cancer. It came as a huge shock to our family. Sue was a very healthy oncology nurse and non-smoker. At first, she thought she had a cold or sinus infection, but it wouldn’t go away, so she went in for further testing. The people administering the tests were her colleagues and friends at the Edward Cancer Center in Naperville. Sue was diagnosed with Stage IV bronchoalveolar adenocarcinoma in both lungs. Sue was a wonderful wife, mother, grandmother, daughter, friend, and nurse. When she passed away in 2011, my husband Dominic and I were in a fog. The day she passed, LUNGevity found us through an email from the Carlinsky family. Dominic worked with Mark Carlinsky, whose wife Lisa passed away from lung cancer in 2008. Lisa had been Sue’s patient at Edward Cancer Center. It seemed like there were a lot of connections drawing us to LUNGevity. We looked into LUNGevity and realized it was a great organization, so we set up a page for family and friends who wanted to donate money toward lung cancer research. In November, we decided to walk in Breathe Deep DuPage to help keep her memory alive. We started a team in Sue’s memory, named “Steps for Sue.” Our team has been walking ever since. In 2013, the event coordinator Michelle Bowles was looking for someone to be a co-chair for Breathe Deep DuPage. Mark recommended me and Michelle sent me an email. As I read the email, I thought, this is my next calling. Michelle and I co-chaired the event in 2013 and 2014. In 2015, Michelle was ready to take a step down, so I became the coordinator. Sue’s loss has inspired me to become involved with LUNGevity Foundation and to raise awareness to fight the stigma surrounding lung cancer. I want the question “Was she a smoker?” to disappear. No one deserves to get lung cancer. I want people to know that lung cancer isn’t just a smoker’s disease. Anyone with lungs can get lung cancer. The most rewarding part of being a volunteer event coordinator is seeing people come to the walk every year. We have had many teams walking for many years and for other teams, it’s their first year. I want the event to be meaningful and impactful for each team that walks. It’s so important for people to come and see survivors and for people to celebrate the memory of the person they’ve lost. Seeing more survivors at the walks each year shows us that what we are doing is making a difference. I’m happy that more people are living longer with lung cancer because of early detection and targeted therapies and the work LUNGevity is doing. Sue Fosco with her granddaughters Melissa with her family
  9. After losing my mother to lung cancer in 2010, I had been looking for ways to help raise awareness for the disease and educate people that lung cancer is not just a “smoker’s disease.” My mother's efforts at raising awareness were very important to her and I wanted to honor her life and efforts by continuing that community outreach. After participating in Breathe Deep Nashville in 2012, I indicated in a post-race survey that I would be interested in helping out the following year. One of the coordinators reached out to me and asked if I would be willing to join the planning committee and I’ve been involved ever since. This past November was my 4th Breathe Deep Nashville to help plan. We usually start working on our November event in March or April, so there is obviously a lot that goes into putting together an event like this. The reward for me after all that is honoring the same group of survivors year after year knowing that we are helping to fund a Foundation that supports them in ways no other lung cancer focused organization does. We are lengthening lives through early detection and focused therapies. We are providing survivors and their caregivers with the support and resources they need. We are making a difference. We are very fortunate in Nashville to have an amazing group of doctors at the Vanderbilt-Ingram Cancer Center working on research and treatments to help end this disease. I choose to continue volunteering my time for the LUNGevity Foundation because some of the funds we raise come directly back to Nashville. Dr. Jonathan Lehman was a recipient of the LUNGevity Career Development Award in 2016. Through that grant I can see our fundraising efforts impacting his amazing research. I hope our fundraising efforts will help us to realize a world where no one dies from lung cancer: a world where no one has to lose their mother too early like I did. Ryan is pictured sixth from the left. The theme of Breathe Deep Nashville is "Stache and Lash" so participants grow or wear fake mustaches and false eyelashes to add creativity and laughter to event day!
  10. Nothing can prepare a man and his family for a lung cancer diagnosis. I remember the night five years ago when my mom called me with bad news. My uncle, Keith, had just been diagnosed with Stage IV lung cancer. Keith is my dad’s youngest brother, who is always making everyone laugh and giving the best bear hugs. He is a husband, father, and small business owner who coached all of his kids’ youth sports teams and never missed a game. My grandfather passed away from paranasal sinus cancer when Keith was seven, so he grew up without really knowing his dad. Because of that experience, Keith is determined to never leave an empty seat at an important family event. The night we found out that our beloved uncle had lung cancer, my sister and I cried together and hugged each other for a long time. We started asking questions like, “How did this happen?” and “Why him?” and “What does this mean?” Then we realized there was only one question we could actually attempt to answer: “What do we do about it?” My mom was at our local farmer’s market when by chance, she met Cindy, the founder of Breathe Deep Baltimore, one of LUNGevity’s grassroots events. Cindy started the Breathe Deep Baltimore walk in 2008 in loving memory of her mom. The event was taking place in Oriole Park at Camden Yards. Monica Barlow, the Orioles’ former PR Director who had the same ALK-positive lung cancer as my uncle, was the keynote speaker. We had to be there. Our first Breathe Deep walk as a family was hopeful and somber as we celebrated survivors and honored those we’ve lost to this terrible disease. Monica spoke about the groundbreaking research that LUNGevity was funding and how important it is to be strong advocates. That was the first time that my uncle met other lung cancer survivors. Until that day, he didn’t have anyone to talk to who understood what he was going through. Breathe Deep Baltimore felt like my family was part of an important movement, and that we were accomplishing something together that was much bigger than what any one of us could have done alone. I had just finished grad school and all of my work and volunteer experience was in marketing and event management, including positions with Susan G. Komen and American Cancer Society. I decided to join the Breathe Deep Baltimore committee and help plan future events. I had no idea then that this group of wonderful people would become like family to me. This September marked my uncle’s fifth year as a survivor, a milestone we celebrated as a family. His first year of treatment included chemotherapy, radiation, and surgeries. He took Xalkori, a targeted therapy drug, for three and a half years and recently switched to Alectinib, both with very positive results. This September also marked my fifth year on the Breathe Deep Baltimore committee and my second year as a LUNGevity employee. Working for LUNGevity, first as a volunteer and now as a full-time staff member, is incredibly rewarding. As the Digital Community Manager, I interact all day on social media and our online communities with patients, survivors, caregivers, and advocates. I am incredibly thankful for the people who are working to create a world where people with lung cancer live longer and better because of early detection and more effective treatments. I am grateful for the opportunity to know and work with these people and to help support others whose lives have been affected by lung cancer. By working together, I am determined and optimistic that we can stop lung cancer. There are always an infinite number of reasons to be hopeful.
  11. I first got involved with LUNGevity in early 2013. My husband had been recently diagnosed with lung cancer and I was looking to participate in a walk to raise the much needed funds for research. I chose to work with LUNGevity because I saw that they had many walk/runs throughout the country. Prior to my husband's diagnosis I didn't know much about lung cancer and like most people believed it was unlikely to ever touch my life as we both have never smoked. After his diagnosis I learned that it's the deadliest of all cancers yet the least funded. And LUNGevity is one of the very few that focuses on lung cancer specifically. I contacted LUNGevity asking if they had a walk in my area - Albany, NY. I first spoke with Diana Aldecoa, the Vice President of Breathe Deep Events, and she indicated that the closest was Syracuse and asked if I was interested in starting one. I organized the first Breathe Deep Albany that year. I believe Breathe Deep Albany has been growing steadily in terms of participation and money raised over the last four years. It's been a welcome and much needed event in our community to support those bravely dealing with this disease. It's been a way for survivors to support each other and spread the word about lung cancer. It's a place for those who have lost someone to remember them and raise money in their memory to help those living with the disease and hopefully to find a cure so others don't have to go through what their loved one had to endure. I know Breathe Deep Albany is very much appreciated and supported by NYOH (New York Oncology Hematology). My husband's oncologist has been a lung cancer specialist for many years in this area and has said that this event has been needed in the community. I'm proud that we've built this event up year by year. The first year we raised $15,000, second year $22,000, third year $25,000 and this past year nearly $43,000. That's over $100,000 raised in our little community. I'm always very proud on event day when everything comes together. The program we hold before the walk is inspiring. We hear from brave survivors who are willing to tell their stories and the remarkable doctors in the area telling us all the new developments on the horizon. I hope our fundraising efforts raise enough money to find a cure or at least the next line of defense in terms of meds. I'd also like to see a test developed to detect lung cancer earlier for everyone so that it becomes routine like mammograms.
  12. How many of our friends here live in the Dallas area? Well all of us in the Support & Advocacy department will be there, including myself, Nikole Ventrca & Katie Brown! I hope you will register and come to meet us in person. Here are more details: http://www.lungevity.org/dfwwalk
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