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Found 9 results

  1. Hi all! My name is Max Huber. I am a current high school student in the Bay Area (San Francisco), and I chose to study lung cancer as my yearlong chronic condition project. I would love to talk with current patients and learn about their experiences, so if you have time to talk please shoot me an email ([email protected])!
  2. Becoming Empowered Advocates My wife, Heather, told me about LUNGevity National HOPE Summit and that she wanted to attend. She received a Travel Grant from LUNGevity and I decided to join her at the conference. It is one of the best things we ever did. The wealth of information about lung cancer available through LUNGevity is not comparable to anything I could find in Canada or through any Canadian organizations. LUNGevity is so caring, thoughtful, and cutting edge. Heather and I attended our first National HOPE Summit in 2016. It was so incredibly inspiring. We got to see first-hand that the statistics are just numbers, not individual expiry dates. The number of people in attendence was impressive and the conference was well organized. We met people from across North America who embodied hope and positivity. It felt like a family. The medical professionals at this event were amazing. They spoke with my wife and gave her their contact information if they could ever assist her in any way in the future. After that experience, I felt empowered to become an advocate and to get involved with awareness events with my wife in our home province of New Brunswick. I followed LUNGevity on Twitter and I joined the LUNGevity Caregivers group on Facebook. I started participating in a few of LUNGevity’s LC Caregiver Twitter chats, which are held the first Wednesday of every month. I utilized the #stopthestigma hashtag on Twitter whenever possible. I volunteered to be a LifeLine Support Mentor to provide peer-to-peer support to other caregivers, and I joined LUNGevity’s Social Media Ambassadors to help raise awareness online. My goal is to raise awareness of lung cancer as the number one cancer killer, taking more lives annually than breast, colorectal, and prostate cancers combined, while receiving the least amount of federal funding for research. I hope that my advocacy efforts will help other caregivers through sharing my experience, strength, and hope. Whenever I can, I join my wife in her advocacy work. It is important to us to stay educated on new treatments, research, and changes within the lung cancer community. We continuously meet with Federal and Provincial politicians to educate them about lung cancer, to lobby for equal access to health care, to promote genetic testing, and to demand equal catastrophic drug coverage in Canada. Heather lends her name and story to different publications to spread the word about lung cancer. Through social media, she has connected with doctors and research scientists across Canada to support their requests for research funding. The most recent was through a connection with a very passionate doctor at the Dalhousie University Research Foundation. I hope to help educate the greater public that if you have lungs, you can get lung cancer. It’s not “just” a smoker’s disease and smoking is listed as a possible cause for all cancers. Lung cancer patients do not deserve this disease. I plan to continue to volunteer at events in my area to help raise funds for research and to promote the work and resources available through LUNGevity. And Heather and I look forward to attending National HOPE Summit together this spring.
  3. Do you want to learn how to become an empowered, informed lung cancer advocate? Join LUNGevity Wednesday, February 7, for a Twitter Chat about Caregiver Advocacy. Join or follow the conversation using the hashtag #LCCaregiver. Lung Cancer Caregiver chats are hosted the first Wednesday of every month from 8:00PM - 9:00PM ET.
  4. 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.
  5. LaurenH

    Nina Beaty

    I was first diagnosed with small cell lung cancer (SCLC) in January of 2014 from a biopsy of the tumor that was sitting on top of my left lung. I had no symptoms I was ill yet I was urged by a radiologist who was a friend of the family to get an early lung cancer detection CT scan of the chest because I had been a smoker years before and grew up in a household of heavy smokers. So for me, it came as a total shock when I was told my diagnosis and “to get into the city for treatment, ASAP. “ For the next two years, I went through the standard treatment for limited stage SCLC, -chemo, radiation to the tumor, and prophylactic radiation to my brain. Good news, the tumor had shrunk but bad news, a new one had begun to grow in my abdomen. Now there was no option left for me except to go on an immunotherapy clinical trial, which I began in June 2015. I know I’m one of the lucky ones. I’ve survived over two years thanks to being enrolled in the clinical trial with the bonus of having virtually no side effects. I first heard about LUNGevity through my oncologist when he invited me to be one of his “patient-guests” at LUNGevity’s Gala in 2016. Encouraged by the speakers and to learn about more about LUNGevity’s focus on increasing the quality of life for cancer survivors and their caregivers, I contacted Katie Brown, LUNGevity’s Vice President of Support & Survivorship, to become a volunteer. I wanted to support other SCLC patients who were probably as confused and conflicted about their choices as I was when I was first diagnosed with this less common type of lung cancer. Katie gave me information about “LifeLine”, LUNGevity’s peer-to-peer support program that matches patients and caregivers to mentors with similar diagnoses. LifeLine mentors forge a personal connection by getting to know their mentee, offering words of encouragement, and by sharing aspects of their own cancer experiences. LUNGevity connected me to my first LifeLine mentee in early 2017. When I’m on the phone with mentees, I try to get a quick take on what that individual would like to get from speaking with me. I usually keep my personal saga with SCLC brief so the mentees have a chance to tell me what’s been on their mind. Sometimes, a particular part of their cancer situation is upsetting or causing frustration, while other times, they would just like to talk it out and have me listen. If I hear we have points in common, I’ll say something like “I get it. X-Y-Z happened to me, too!” Then I reassure them that they will get though it and find the solution that’s right for them. Some mentees just want a one-time chat to know someone else has survived the same illness. Others, who don’t have anyone they feel close to, might call me more frequently. One time I called Katie to get her advice on how to handle a situation that I felt was beyond my capacity to deal with. She was very understanding and together we came up with workable solution. So if you become a LifeLine mentor, don’t be afraid to reach out to the LUNGevity staff. They’re there to support you, too. The most rewarding thing about being a mentor is hearing someone newly diagnosed with SCLC say, ”Oh I’m so glad I talked to you. I feel like this is doable now. If you survived, maybe I can too.” Hope is the most precious gift I could ever offer somebody, which may sound a bit drippy, but it’s so true. I get to offer hope every time I tell my story that I have survived longer than I, or anyone else, would’ve believed possible. Photo credit: Ben Hider for the CURE Magazine
  6. Cancer advocate to address largest lung cancer survivor conference FOR IMMEDIATE RELEASE Media Contact: Linda Wenger [email protected] (973) 449-3214 Country music star and cancer survivor Wade Hayes WASHINGTON, DC (February 16, 2017) – LUNGevity Foundation is excited to announce that country music star Wade Hayes will be sharing his cancer journey with lung cancer survivors and their caregivers at the 7th Annual National HOPE Summit on April 29 in Washington, DC. As opening keynote speaker, he will relate his experiences before the largest convening of lung cancer survivors in the country. The annual LUNGevity National HOPE Summit is the largest lung cancer survivorship conference where attendees come from across the country and around the world to learn about living well with lung cancer. The three-day event features inspirational speakers, medical expert forums, lung cancer survivor-specific sessions, advocacy sessions and opportunities for lung cancer survivors at all points in their treatment to connect with each other. Hayes will kick off the two-day conference and set the tone of hope for all in attendance. Hayes was diagnosed with stage IV colon cancer in the fall of 2011. After extensive surgery and debilitating chemotherapy, Hayes battled his way back to health only to have the cancer return in the fall of 2012. The country singer fought back and channeled his experience into his latest album, “Go Live Your Life.” Today, Hayes is cancer free, a dedicated advocate for people living with cancer, and an active supporter of the Colon Cancer Alliance and other cancer nonprofits. He has spoken and performed at numerous events across the country to raise funds to fight cancer and inspire others. “We couldn’t be more thrilled to have Wade Hayes join us for this one-of-a-kind celebration of lung cancer survivorship,” said Katie Brown, VP Support and Survivorship. “His commitment to advocating on behalf of others with cancer makes Wade an inspiration for all of us.” The National HOPE Summit is a 2½ day conference in Washington, DC, that is open to lung cancer patients, survivors, and caregivers. Learn more about this unique event and register atwww.LUNGevity.org/hopesummit. Read the full press release here.
  7. 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!
  8. Hi my name is Terry Gillespie. I am a 13-year lung cancer survivor. I started my lung-cancer journey back in October 2003. In the fall, I am prone to sinus infections, so as usual I got one. It just so happened this time that I let it go a little longer because I had just lost my job and had no insurance. When it got so bad and I coughed so hard that I had a little blood in my sputum, I called the doctor and made an appointment. My doctor prescribed the usual antibiotics, and when I mentioned that this sinus infection was worse than normal, and that I must have hurt my throat coughing because I saw a little amount of blood. She said that she was concerned that I may have pneumonia or TB, so decided to run tests. That was when my world turned upside down. At that time, there was very little information about lung cancer treatments and very grim survival rates. I had very little support. After my biopsy, it was confirmed that it was cancer. I told the doctors that I did not want to know what they thought my end date would be. I was going to die at the ripe old age of 80, in my sleep. So on we went with the treatment with no mention of a termination date. I had my left lung removed, and then I had radiation and chemotherapy. I was bald and beautiful. I also had some pretty bad side effects. During surgery, my surgeon accidentally hit my right vocal chord and I was without a voice for two years. Let me tell you, I can now hit my target directly when I throw things to get attention! I have permanent sciatica on my left side. I am one of the lucky lung cancer survivors and I have not had a recurrence. People tell me that I look great for having lung cancer. It makes me wonder . . . What do people think that cancer survivors look like? The reality is that many lung cancer patients are not so lucky. I chose to be an advocate for lung cancer awareness as soon as I physically and mentally was able. I decided that I can help make a difference. My motto was “Nobody Deserves to Die from Lung Cancer.” I still believe that today. We have to do whatever we can to raise awareness, to educate people that this is NOT only a smoker’s disease, and to raise money for research to help eliminate lung cancer. (Terry, right, pictured with fellow survivor and friend Tommieanne Bolden, at National HOPE Summit)
  9. Help invite people to learn about LUNGevity by taking brochures with you next time you are in a place where other people who have been affected by lung cancer would benefit from them. The brochures have information about LifeLine - A peer to peer support program, advocacy opportunities, information about HOPE Summits, and more! http://www.lungevity.org/about-us/request-materials
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