POPULARITY
In this conversation, Terri Coutee shares her personal journey through breast cancer, including her diagnosis, treatment, and the decision to undergo the diep flap reconstruction procedure. She discusses the importance of education and support for women facing similar challenges and highlights her work in establishing a nonprofit organization dedicated to helping others navigate their breast cancer journeys. The conversation also touches on the significance of community, genetic testing, and the resources available for survivors. Terri Coutee, is a patient advocate with eight years of nonprofit management experience. She is the Founder of DiepCFoundation nonprofit organization she opened in 2016 two years after her own successful breast reconstruction, to provide support, education, and resources for those affected by breast cancer facing mastectomy. She is a two-time breast cancer survivor who has had breast surgery and treatment that includes lumpectomies, chemotherapy, radiation, mastectomy, and DIEP flap reconstruction. Terri is a Project LEAD graduate, a premier science training for advocates in breast cancer research and public policy from the National Breast Cancer Coalition. She is co-lead on the World Health Innovation Summit shared decision-making expert group. Terri is a consumer patient advocate serving on the DoD-CDMRP for the breast cancer vaccine under the leadership of the team at the Cleveland Clinic. She takes part as a patient advocate on the PCORI (Patient-Centered Outcomes Research Institute) Engage for Equity PLUS project partnering with eight leading academic institutions to transform how research is conducted with the goal of strengthening patient and community leadership in research. She has been an invited guest faculty speaker at the London Breast Meeting, BC3 Breast Cancer Coordinated Care Conference, The American Society of Plastic Surgeons Conference, the iBreast Book online seminar series, and local breast cancer support groups about the importance of shared decision making and empowering patients to be their own best advocates. Terri was awarded the Patients of Courage: Triumph Over Adversity Award at the annual scientific meeting of the American Society of Plastic Surgeons in Chicago in 2018. Her focus is fostering patient engagement in breast cancer treatment, surgery, and care. As a life-long educator, she believes education is the key component for patients being able to have a shared decision-making conversation with their health care team. She is an avid weightlifter as a prescription for bone health after being on Anastrozole for her breast cancer. TAKEAWAYS Self-exams are crucial; know your body. Education is key in navigating breast cancer treatment. Deep flap reconstruction offers a natural option for women. Microsurgeons specialize in complex breast reconstruction. Community support plays a vital role in recovery. Genetic testing can inform treatment decisions. Women should feel empowered to ask questions about their care. Recovery experiences can vary greatly among individuals. Nonprofits can provide essential resources and education. Age should not be a barrier to receiving treatment. Get in Touch with Terri Facebook: https://www.facebook.com/diepCfoundation.org/ Instagram: https://www.instagram.com/diepcfoundation/ Pinterest: https://www.pinterest.com/tgcoutee/ Twitter/X: https://x.com/6state LinkedIn: https://www.linkedin.com/in/terricoutee/ YouTube: https://www.youtube.com/@DiepCFoundation Libsyn also on Spotify: https://diepcjourney.libsyn.com/ Blog: https://diepcjourney.com/ Foundation Page: https://www.diepcfoundation.org/ Book: "Go Find", by Susan Purvis Podcasts: "The Art of Manliness"; "Huberman Lab"; "Chasing Life"; "Nonprofits are Messy" Terri's podcast: DiepCJourney. Terri hosts the DiepCJourney podcast interviewing patient advocates, healthcare professionals, and individuals interested in the survivorship journey to provide resources and lived stories to listeners.
Questions about breast cancer should always be directed to a physician. Though physicians may not have all the answers, they remain useful allies in the fight against a disease that the World Cancer Research Fund International reports will be discovered in roughly three million women this year. As women seek more knowledge of breast cancer, it can be just as important to recognize some common myths surrounding the disease. Myth: MRIs are more effective than mammograms. The National Breast Cancer Coalition notes that no evidence exists to support the assertion that a magnetic resonance imaging exam is a more effective...Article Link
She Believed She Could, So She Did with Molly MacDonaldJoin Molly and Katana as they discuss:The power of belief.How to create a committed, competent, and caring culture.Why a nonprofit organization needs to be run like a for-profit business.Molly MacDonald is an almost 19 year breast cancer Survivor, co-founder of Pink Fund with her husband Tom Pettit. She holds a degree in journalism from The University of Michigan and has a background in event planning, marketing, and public relations. Following her 2005 breast cancer diagnosis, Molly experienced the side effect of financial toxicity, a term that was not coined until 2013. Her personal experience led to identifying a gap in services for men and women in active treatment for breast cancer.To date, Pink Fund has delivered $7.8 million in financial assistance to the patient's creditor for housing, transportation, utilities, and insurance.Molly is a keynote speaker and moderator for various national healthcare conferences. She is a Director on the board of the National Breast Cancer Coalition and a board member of The University of Michigan's Value-Based Insurance Design. She is the mother of five adult children and grandmother to three.To learn more about Molly, visit pinkfund.org.
You might be wondering why we are interviewing the founder of the National Breast Cancer Coalition, Fran Visco. Well, it turns out that she is the person primarily responsible for the formation of the Congressionally Directed Medical Research Program (CDMRP) out of the Defense Department. One of their many programs is SCIRP - the Spinal Cord Injury Research Program. Fran was the first peer reviewer for breast cancer after CDMRP was formed. Today's interview conversation was extraordinary for illuminating the parallels and insights between two very different disease conditions. It was so insightful to listen to someone who has been advocating in a different space - breast cancer (Fran is also a survivor of breast cancer) - for some 30 plus years, but who has run up against the same barriers in the research system that we in the SCI space deal with as well. To talk with Fran about the similarities in our work and advocacy efforts was fascinating and fantastic. As many of you know, we in the SCI community always hear the money refrain: that what we really need is “more money, more money, more money.” Well, cancer receives a lot more money than spinal cord injury, obviously. But what's fascinating, and what our conversation shows, is that... More info: https://u2fp.org/get-educated/curecast/episode-98.html
Terri Coutee is the Founder and Director of DiepCFoundation. She started the nonprofit organization in 2016, two years after her own successful breast reconstruction, to provide support, education, and resources for those affected by breast cancer facing mastectomy. Terri hosts the DiepCJourney podcast and the DiepC Foundation educational channel where she interviews surgeons, patients, healthcare professionals, and individuals to provide resources and lived stories to listeners. She provides written content through her blog at DiepCJourney.com. Terri is a Project LEAD graduate, an intensive six-day science course designed to train patient advocates from the National Breast Cancer Coalition. She is co-lead on the World Health Innovation Summit shared decision-making expert group. Terri is a consumer patient advocate serving on the DoD-CDMRP for the breast cancer vaccine under the leadership of the team at the Cleveland Clinic. She has co-authored published papers and assisted surgeons and researchers gathering data for on-going studies in breast cancer and breast reconstruction to improve patient experience and outcomes. Terri believes education is the key component for patients being able to have a shared decision-making conversation with their health care team. Here educational resources and social media contact information can be found here: DiepCFoundation Educational Channel on YouTube DiepCJourney Podcast We are on Spotify, Libsyn, Apple Podcasts, and Amazon Music DiepCJourney.com Blog Social Media Channels: LinkedIn: Terri Coutee Facebook: diepCfoundation.org Instagram: diepcfoundation Pinterest: tgcoutee (DiepCFoundation.org) Twitter: @6state
Please join Laura Bell Bundy, Jennifer Herrera and Emily Bonistall Postel live The Locher Room as we have a conversation about the most pressing issues facing women in 2022 and beyond. These women prioritize education, empowering women and work towards cultural and social change. Together they are using their voices to awaken the masses to the extreme inequalities and issues in our society, including equal pay, breaking the glass ceiling, the silencing of women, unrealistic beauty standards, obsession with social media, the new masculinity, domestic violence, sexual assault, motherhood, pregnancy and abortion rights. Laura Bell Bundy is a Tony nominated Broadway actress and Billboard top 5 recording artist. She is also the co-founder of the Women of Tomorrow Foundation and a National Women's History Museum ambassador. Laura's Women of Tomorrow album, podcast, web series mentorship program and live concerts have primarily focused on promoting gender equality and raising funds for female causes. Their work has benefited organizations such as: ACLU, Planned Parenthood, Futures Without Violence, National Breast Cancer Coalition, The National Women's History Museum, The Downtown Women's Center, & The ERA Coalition.Dr. Emily Bonistall Postel, Board President of the Women of Tomorrow Foundation, is an educator and activist who has demonstrated a deep commitment to crime victims over the course of her career.Jennifer Herrera is the chief communications officer for the National Women's History Museum, where she oversees all public affairs, marketing, and media relations efforts. In this role, Herrera leads the Museum's work with external partners, the NWHM National Coalition, and other key regional and national stakeholders. Please join us for this conversation to learn more about these important issues and how you can help drive change.Original Airdate: 7/7/2022
~ Co-presented with CancerChoices ~ Join Host Michael Lerner in conversation with cancer coach Lindsay McDonell about her journey with cancer, her coaching work, and her work with the Smith Center for Healing and the Arts in Washington, DC. Lindsay McDonell Lindsay is a speaker, cancer coach, and the author of "Your Dance with Cancer." She is an eight-year thriver with metastatic breast cancer and chronic myeloid leukemia. Lindsay is Project LEAD certified with the National Breast Cancer Coalition, a certified Integrative Oncology Navigator with the Smith Center for Healing and the Arts, a You Can Thrive coach, and a CancerChoices guide. You can find out more about Lindsay on her facebook page https://facebook.com/YourDancewithCancer and her website https://yourdancewithcancer.com . Host Michael Lerner Michael is the president and co-founder of Commonweal. His principal work at Commonweal is with the Cancer Help Program, CancerChoices.org, the Omega Resilience Projects, the Collaborative on Health and the Environment, and The New School at Commonweal. He was the recipient of a MacArthur Prize Fellowship for contributions to public health in 1983 and is author of Choices in Healing: Integrating the Best of Conventional and Complementary Therapies (MIT Press). Find out more about The New School at Commonweal on our website: tns.commonweal.org. And like/follow our Soundcloud channel for more great podcasts.
Join me for a deeper understanding of breast cancer, with Dr. Stephanie Graff, a medical oncologist who specializes in breast cancer. Dr. Graff sheds light on what breast cancer is, why it's such a diverse disease, and the role of genetic and lifestyle risk factors. We also discuss the rise of "expert patients" and the challenges and opportunities of navigating cancer in today's complex information environment. Dr. Graff cares for breast cancer patients at the Lifespan Cancer Institute in Rhode Island, where she is Director of Breast Oncology. She is also actively involved in cancer research and clinical trial design, and is Assistant Professor of Medicine at Brown University. Dr. Graff is passionate about empowering patient advocates, and serves as a medical advisor to the Dr. Susan Love Foundation for Breast Cancer Research. Connect with Dr. Graff: Twitter @drsgraff: https://twitter.com/DrSGraff Brown University: https://vivo.brown.edu/display/sgraff Lifespan Cancer Institute: https://www.lifespan.org/providers/stephanie-l-graff-md Publication - The Rise of the Expert Patient in Cancer: From Backseat Passenger to Co-navigator. https://pubmed.ncbi.nlm.nih.gov/35344398/ Resources: Cancer.Net - Oncologist-approved information about cancer (by American Society of Clinical Oncologists) https://www.cancer.net American Cancer Society Breast Cancer Resources https://www.cancer.org/cancer/breast-cancer.html Project LEAD - Science training for advocates (by National Breast Cancer Coalition): https://www.stopbreastcancer.org/what-we-do/education/project-lead/ Dr. Susan Love Foundation for Breast Cancer Research https://drsusanloveresearch.org
Kay Dickersin, MA, PhD, professor emeritus at Johns Hopkins Bloomberg School of Public Health, is one of the early leaders of the National Breast Cancer Coalition. In this interview, Dickersin discusses her breast cancer diagnosis at age 34, and her frustration that, at the time, most support groups seemed to focus on how to fix your makeup or your wig. Dickersin, along with Marsha Oakley, a breast cancer survivor and nurse in Baltimore, decided to start their own advocacy group called Arm-in-Arm. This group addressed the difficult aspects of treatment and produced newsletters that were lighthearted in nature. Members of Arm-in-Arm called their jokes about their circumstances whistling past the graveyard. Then, the group received an invitation from the Breast Cancer Coalition to attend the first meeting. From there, Dickersin became one of the group's leaders, chairing NBCC's research task force. Dickersin was one of the architects of Project LEAD, NBCC's initiative to educate advocates about the science of breast cancer. In this conversation she recounts Project LEAD's beginnings and its impact. A transcript of the episode is available here.
Lindsay McDonnell This week Ivy Slater, host of Her Success Story, chats with her guest, Lindsay McDonnell. The two talk about her dance with cancer, how her natural curiosity helped her to see the cancer objectively, and how to best allow space and bring goodness to people we love who are cancer thriving. She tells us, “Dancing is the opposite of fighting. lets you learn new steps, lets you not be so afraid of the fight, and leaves open your curiosity.” In this episode, we discuss: How Lindsay built a business from a place of thriving as her life shifted drastically Her dance with cancer, and how she is helping to change doctors' focus from the disease to the patient Why her natural curiosity made it so that she could see her own cancer objectively, instead of personally How she provides the ability to remove the fear in the situation of other cancer thrivers What Lindsay is doing to create more avenues to make an impact in the lives of people who are experiencing the project of cancer What methodology she uses to bring power to the disempowered What Neurolinguistic programming (NLP) is What we can do to nourish ourselves, and the process we can all use to create a joyful experience How to best allow space and bring goodness to people we love who are cancer thriving Lindsay McDonell is a speaker, sought-after cancer coach, and author. She is an eight-year thriver with metastatic breast cancer and chronic myeloid leukemia. Lindsay is Project LEAD certified with the National Breast Cancer Coalition; a certified Integrative Oncology Navigator with the Smith Center for Healing and the Arts; a You Can Thrive coach; and a Cancer Choices guide.Website: www.yourdancewithcancer.comEmail: Lindsay@YourDanceWithCancer.com Book: https://www.amazon.com/dp/B0B9P13942 Facebook: https://www.facebook.com/YourDanceWithCancer Instagram: https://www.instagram.com/yourdancewithcancer
As founding and managing partner of Andrews Thornton LLC, Anne Andrews specializes in litigating personal injury mass tort cases involving bankruptcy and dangerous pharmaceuticals. Andrews recently started working with the Tort Claimants Creditors' Committee, representing thousands of survivors who were sexually abused during their time in Boy Scouts, inspiring her to co-found the Coalition of Abused Scouts for Justice. Anne holds extensive experience in multi-district and multi-state litigation, serving on executive plaintiff committees in multiple federal MDL's, and co-chairs the Official Creditors Committee. Anne maintains heavy involvement with Mass Torts Made Perfect (MTMP) and regularly gives seminars at their bi-annual national convention. In 2021, she received the MTMP Legal Innovation Award for her work for victims of mass tort bankruptcy. She has also previously served as President of the Orange County Trial Lawyers Association (OCTLA) and led the American Association for Justice (AAJ)'s Hydroxycut and Fungal Meningitis Litigation Groups. Anne received an Honorary JD from University of California Irvines's School of Law for her firm's contributions to their program, which included working with the UCI moot court, funding a scholarship endowment, and serving on Dean Erwin Chemerinsky's Advisory Committee. Outside of the courtroom, Anne sits on the leadership board of the Mission Plasticos, a non-profit that works to finance reconstructive surgery to those in need. She also serves as an advisor on a National Breast Cancer Coalition's Artemis Project which researches preventative measures to stop breast cancer in women and men. Anne Andrews Social: Twitter Linkedin Andrews Thornton Social: Facebook Twitter Instagram LinkedIn Coalition of Abused Scouts for Justice - https://scoutingabusesurvivors.com/ Orange County Trial Lawyers Association - https://www.octla.org/ American Association for Justice - https://www.justice.org/ UCI Scholarship Endowment - https://www.law.uci.edu/news/press-releases/2021/andrews-thornton-scholarship.html Mission Plasticos - https://plasticosfoundation.org/about-us/executive-team/ Remember to subscribe and follow us on social media… LinkedIn: https://www.linkedin.com/company/mass-tort-news Twitter: https://www.twitter.com/masstortnewsorg Facebook: https://www.facebook.com/masstortnews.org
Breast Cancer Prevention News. Ann Fonfa founder of the AnnieAppleseedProject speaks on the dangers of processed foods to wellness especially for cancer patients. "From its inception, the Annie Appleseed Project decided to Challenge the Existing treatment paradigm, to Question the existing research methods and subjects, and to Propose new directions for both ending with true Integrative Oncology. Thus the program name Cheqpt, designed to bring complementary, alternative therapies to the mainstream as soon as may be, while serving as a place where all ideas are scrutinized." - Quote from her website.The term “processed food” can cause some confusion because most foods are processed in some way. However, chemically processed foods often only contain refined ingredients and artificial substances, with little nutritional value. They tend to have added chemical flavoring agents, colors, and sweeteners.These ultra-processed foods are sometimes called “cosmetic” foods, as compared with whole foods.Some examples of ultra-processed foods include:frozen or ready mealsbaked goods, including pizza, cakes, and pastriespackaged breadsprocessed cheese productsbreakfast cerealscrackers and chipscandy and ice creaminstant noodles and soupsreconstituted meats, such as sausages, nuggets, fish fingers, and processed hamsodas and other sweetened drinksAre processed foods bad for you?Ultra-processed foods tend to taste good and are often inexpensive. They are addictive but have no nutritional value.However, they usually contain ingredients that could be harmful if consumed in excess, such as saturated fats, added sugar, and salt. These foods also contain less dietary fiber and fewer vitamins than whole foods.Highly processed foods can lead to weight gain, diabetes and obesity.Processed foods and beverages are among the major sources of added sugar in the diet. Sweetened beverages are a particularly significant source; people tend to consume much more sugar than they realize in soft drinks.The ingredients list on the back of processed food packaging is often full of unrecognizable substances. Some are artificial chemicals that the manufacturer has added to make the food more palatable. Rule of thumb - if you don't know what it is - don't eat it.Ann serves on the board of directors for the National Breast Cancer Coalition and has been an active grant reviewer for journals and the Dept of Defense, for which she recruits other cancer survivors.She is well-known for moving awareness forward. Ann spoke at events around the world and is very proud of her work. She doesn't take personal credit for the interest around Integrative oncology but she was the charter Advocate member of the Society for Integrative Oncology. It's time is NOW.Today many in oncology acknowledge the need and value for exercise, nutritional changes, handling stress and more.Ann is one amazing lady! Support the show
Kim Meckwood is a two-time breast cancer survivor and one of the most determined people I've ever met. Her story of grit and unbelievable perseverance is beyond inspiring! She holds the record for the most auditions before getting on Shark Tank with seven tries! "No" just means "no for now," according to Kim, and she has lived that out with remarkable persistence. That persistence especially paid off when she landed a deal with Barbara Corcoran and Mark Cuban for her brilliant invention, Click & Carry. Initially designed to help you easily carry multiple shopping bags at once without crushing your fingers or breaking your arm (can't we all relate?!), Click & Carry has since expanded to many other helpful options. Lug paint cans, ski boots, work gear, loads of sporting equipment, and more with this simple, game-changing product. In this episode of Lessons From The Tank, Kim shares - with her contagious passion - the following and much more: Her inspiration for Click & Carry Advice for entrepreneurs who want to be on Shark Tank How to maintain a positive outlook despite adversity Her personal struggles and overcoming breast cancer - twice Kim has also created a special pink breast cancer awareness Click & Carry, and for each one sold, she donates 10% of the proceeds to the National Breast Cancer Coalition. Be sure to visit clickandcarry.com to learn more about Kim's story and her products. --- Send in a voice message: https://podcasters.spotify.com/pod/show/lessonsfromthetank/message
With a career in entertainment spanning over two decades, Tara Darby Rasheta has worked as a professional model serving fashion clients like Guess, Jessica Simpson, True Religion, Speedo and Patagonia, and also hosting travel shows like Crossing Country and Get Out. In 2009, Tara took her passion for molding the next generation of models to new heights by co-creating Model Makers Group, a talent consulting company which she still operates. She also serves as the Director of Development for JDW Cotillions, a social skills training program for school-aged children. Tara acted as Miss Alabama USA 2004 and placed as a Top Ten Finalist at Miss USA. When she won Fear Factor: Miss USA Edition (NBC) and made a contribution to the National Breast Cancer Coalition, she never expected to face the disease herself at age thirty-five. Tara is determined to use her voice and platform to touch the lives of other young women facing a health crisis through the non-profit she founded in 2018, A Model Patient 501c3. --- Support this podcast: https://podcasters.spotify.com/pod/show/grayson-mask/support
The Importance of Breast Cancer Advocacy: Special Guest Ann Fonfa: Annie Appleseed Project. What are the challenges of Breast Cancer Advocacy? Why are breast cancer advocates so important? Tips for cancer survivors on how to follow a path to wellness!Ann Fonfa was diagnosed with breast cancer in January 1993. She was suffering from extreme Multiple Chemical Sensitivity, a still not recognized illness. She avoided chemotherapy, hormonal and radiation treatments using surgery and natural strategies to survive. Told she was stage IV in 1997, Ann added personalized Chinese herbal prescriptions to her complex complementary protocol. In 1999 she founded Annie Appleseed Project, an all-volunteer cancer nonprofit sharing evidence-based information on complementary therapies (Integrative Oncology). Ann has spoken at many conferences and events, been interviewed and presented posters. Her work continues to educate and inform the community of people with cancer as well as all in oncology. The Annie Appleseed Project has presented a lot of information on males with breast cancer and on the LGBT community. The website had an International section as well.Ann serves on the board of directors for the National Breast Cancer Coalition and has been an active grant reviewer for journals and the Dept of Defense, for which she recruits other cancer survivors.She is well-known for moving awareness forward. Ann spoke at events around the world and is very proud of her work. She doesn't take personal credit for the interest around Integrative oncology but she was the charter Advocate member of the Society for Integrative Oncology. It's time is NOW.Today many in oncology acknowledge the need and value for exercise, nutritional changes, handling stress and more.An amazing lady! Support the show
Ann Fonfa was diagnosed with breast cancer in January 1993. She was suffering from extreme Multiple Chemical Sensitivity, a still not recognized illness. She avoided chemotherapy, hormonal and radiation treatments using surgery and natural strategies to survive. Told she was stage IV in 1997, Ann added personalized Chinese herbal prescriptions to her complex complementary protocol. In 1999 she founded Annie Appleseed Project, an all-volunteer cancer nonprofit sharing evidence-based information on complementary therapies (Integrative Oncology). She has spoken at many conferences and events, been interviewed and presented posters. Her work continues to educate and inform the community of people with cancer as well as all in oncology. The Annie Appleseed Project has presented a lot of information on males with breast cancer and on the LGBT community. The website had an international section as well. Ann serves on the board of directors for the National Breast Cancer Coalition and has been an active grant reviewer for journals and the Dept of Defense, for which she recruits other cancer survivors. She is well-known for moving awareness forward. Ann spoke at events around the world and is very proud of her work. She doesn't take personal credit for the interest around Integrative oncology but she was the charter Advocate member of the Society for Integrative Oncology. It's time is NOW. Today many in oncology acknowledge the need and value for exercise, nutritional changes, handling stress and more. Support the show
Drs. David Johnson (University of Texas) and Patrick Loehrer (Indiana University) host the first of two Oncology, Etc. episodes featuring Mr. Paul Goldberg, book author, investigative reporter, and Editor and Publisher of The Cancer Letter. In part one, Mr. Goldberg reflects on his two main interests − human rights and cancer, and his early career as a journalist and novelist. If you liked this episode, please subscribe. Learn more at education.asco.org, or email us at education@asco.org. TRANSCRIPT Dr. Pat Loehrer: Hi I'm Pat Loehrer, I'm the director of the Center for Global Oncology and Health Equity here at Indiana University. Dr. David Johnson: Hello, my name is David Johnson. I'm at UT Southwestern in Dallas, Texas. And we've got a great guest today and we're excited about the interview. Dr. Pat Loehrer: Yeah, it's very timely too, I think it's terrific. Before we go on to that, are there any recent books that you've read that you want to recommend? Dr. David Johnson: Yeah, actually, I do. It's somewhat related to our topic today. I just finished a book entitled, Presumed Guilty by Erwin Chemerinsky, who's the Dean of the Law School at the University of California, Berkeley. It's actually recommended to me by a lawyer friend. I think most of our audience knows the fourth, fifth, and sixth amendments to the Constitution are the ones that provide protection for people accused of crimes. And I think most of us are familiar with the Warren Court in the 50s and 60s, which seemed to be a very, quote-unquote liberal court that provided many of the protections that you see on TV shows, police TV shows de including the Miranda protections, but as Chemerinsky points out in his book, that really is a historical aberration, that the Supreme Court from its founding really right through today is then on the opposite side of the fence in terms of protection to the accused can many landmark rulings over the last several years, including Terry versus Ohio and City of Los Angeles vs. Ryan, have actually provided protection and sanction stop in frisk activities, limited suits against police departments to institute reform, and even provided some benefit for the use of so-called lethal chokeholds. Smaller than I think, in light of what's happened over the last several months, really provided some insight, to me at least, about how the Supreme Court looks at the protection of the accused. I thought it was a very interesting book to read. And Chemerinsky does a great job of explaining these landmark cases in a way that simpleton like myself can understand them. So, I recommend it to you. I think you'd enjoy it. Dr. Pat Loehrer: Yeah, there's a book called “Just Mercy” by Bryan Stevenson. I'm not sure if you've ever had a chance to read that. It is an outstanding read. They made a movie out of it but if you get a chance to read the book, it's really terrific. Again, it talks a lot about the inequities in terms of how our court systems have prosecuted people of color for minor crimes compared to people that are in the majority here. But I think both of those would be great reads. Dr. David Johnson: Yeah, I haven't read it, but I will. Dr. Pat Loehrer: Yeah, it's terrific. Go for it. Going ahead in getting started, it's our great pleasure to have Mr. Paul Goldberg join us today. Anyone in oncology knows him. He is the editor of the Cancer Letter. Interestingly, he was born in Moscow and emigrated here to the United States at the age of 14, where he went to Virginia. He got his undergraduate degree at Duke in economics. And shortly thereafter, he worked in a newspaper in Reston, Virginia, where he met his future wife. I think from there, they went to the Wichita Eagle in Kansas. His wife was actually the daughter of the founder of what was to become the Cancer Letter, Jerry Boyd. He rose to associate editor and finally editor in 1994, and publisher and editor about a decade ago. The Cancer Letter is the go-to newspaper for us in oncology. Over 200 institutions subscribe. There's not a cancer center director in the country that does not look forward every week. One is to see if it's in there, you hope it isn't. And then if it is, you hope that there are really some platitudes in there about how wonderful you are, and then you can go ahead and read the rest of the article. The New York Times once said that everybody who's anybody in the cancer field reads this newsletter. He's won a number of awards, including the Washington DC professional chapter of the Society of Professional Dermatologists and some Gerald Loeb awards. His investigative work has uncovered some extraordinary events, including the Duke scandal with genomics, the ImClone scandal, as well as some of the workings of SIPRAD and MD Anderson, and I think he is really a flashlight that looks in the dark corners of our world, but also is there also to cheer on some of the accomplishments in oncology, and he knows Brawley and have written a book together, How We Do Harm. They're also doing the history of oncology together. He's a novelist. He's a nonfiction writer, and he's an extraordinary individual. And I think we're really looking forward to spending a few minutes with you here, Paul, thank you for joining us. Paul Goldberg: Thank you for inviting me. This is really a pleasure to spend some time with friends. Dr. Pat Loehrer: Well, by the time this gets aired, hopefully, the crisis in Ukraine will be over. But just last week, the Russians invaded Ukraine, and I think it's very timely to hear more about this and the fact that you grew up in Moscow and Russia. Tell us a little bit about your early life, your upbringing, your family background, and what prompted your family to immigrate here to the United States? Paul Goldberg: Well, it suddenly became possible and it was something that my father wanted to do. So, we just sort of ran as soon as we could, and certainly, I had kind of a fascinating time that I've been chewing on for many years as a novelist. In fact, they've just turned it into a novel, which will be published not this coming summer, but the following summer, it's called The Dissident. It's about the Soviet human rights movement and it's set in 1976. By then I was here, actually. But it's kind of like material that found me and really weirdly, it's also why I'm in oncology, where I'm covering oncology. My material kind of found me when I was in college, my drinking friend's mother, Ludmila Alexeiava was one of the founders of the Moscow Helsinki group. Interestingly, also, my first book was about the Moscow Helsinki watch group, which is really the beginning of human rights monitoring, which is really a staple, let's say the beginning of the NGOs. It's a staple of world order to rely on people within the country that it's being written about covering themselves in a way. It's kind of like free social media. And then, of course, enhanced greatly by social media. That was my beginning, but what was also interesting is that being a writer, and I really wanted to be a novelist, I did not want to then write nonfiction, but the material was so good that I had to jump in. Then I also had to, like, temporarily at least, make a living doing something else. So, my former father-in-law, my dad at the time, my father-in-law, now my late former father-in-law, terrific guy, Jerry Boyd, just hired me to do some work for him. I started some stuff and he used to brag that he's the only guy who's ever made money off son-in-law. Dr. David Johnson: But Paul, I'd be really interested to know, where did your interest in cancer begin? Was it with the Cancer Letter or had there been some interest prior to that? Paul Goldberg: Well, when I was working for the Wichita Eagle, I kind of got interested, I always gravitated towards stories about things like insurance, for example, the value of life, anything that had to do with these sorts of very complicated philosophical questions. That was kind of the beginning of my interest. That's why I didn't say, oh, no, this is too wonky. I don't want to have anything to do with this. Also, when people realize, it's always interesting, there's a fair amount of that in oncology. So, I was trying to find that, and just the complexity and the characters. You'll run into characters in oncology that you kind of wish to run into because you can have half an hour-long conversations or two-hour-long conversations or three-hour-long conversations with a lot of folks without really getting off-topic. I mean, I get a lot of criticism from the kids and my staff telling me that I'm nonlinear in my thinking, but that's linear in this field. It's also once you get into questions like ethics, that's really the fundamentals of oncology, and that's also the fundamentals of my other interest, which is human rights. It's also the artistic potential of this field is incredible. It just kind of grew on me but basically, it all began as a kind of a way to make up for unevenness in cash flow from writing books. And then it just became so great. If you want, I can tell you what the actual events were that made me just say, this is my field. Dr. David Johnson: Yeah, I'd love to hear that, tell us. Paul Goldberg: Two early ones. One of them was the beginning of the National Breast Cancer Coalition. I was initially taking a nap at the Senate hearing. I was editing a manuscript that was around 1992. I was editing a manuscript that got a little bit boring for me to just sort of listen to most things and I just fell asleep. And then I heard Fran Visco's voice booming through and I had no idea who Fran Visco was, nobody had any idea who Fran Visco was. He was giving her “Men in Suits” speech, which is like the beginning of the patient's movement in breast cancer. I kind of woke up and I pushed the button on my tape recorder and I got it. It was just unbelievably cool. I said, okay, so conversations that they had in the kitchens, wherever, there are these people who are talking about setting up a public movement, because there was never a public movement really of patients in oncology. For the most part, it just felt a little bit boring. I started working around the corners of oncology around 1985-86, really, 5 or 6 years later, I was writing other books. And I was bored a little bit because there were a bunch of white guys making decisions behind closed doors. They stopped smoking a few years before, but there were still white guys behind closed doors. Suddenly, this was something completely different. This was a public movement. And I could recognize the public movement because I'd seen them, I'd written about them, I did a story about them. So, there was that. Then came up about that very same time, really roughly the same time came the NSABP scandal. The Cancer Letter was writing fairly short stories. Now, it has been around since 1973. So, there's just this incredibly rigorous device for monitoring the history of oncology, you can just crack the thing. But it was different because Jerry didn't write 5000-word stories. Sometimes he did but mostly he didn't. But I can't really express myself briefly, I kind of have to go, and so, I started realizing that I could just return to this story over and over and over till I understood it, until everybody else got, so because of drilling, probably I must have written 40 stories on NSABP, maybe more. I don't know, over the years, maybe I'd written, but they just sort of said to me, hey, this is a field that's now politicized in a way that kind of sustains journalism. Controversy is unbelievably cool with this because here's a group of patients who are saying, we don't really care about NIH funding, in this case, but we care about just funding for breast cancer, and we want to do it our way. Let's do it through DOD. That was an amazing story to cover. Then there's the story of Bernie Fisher, who was like the great man of oncology, getting kind of pulled through the wringer on this thing, and it was awesome. Then another thing started happening. I started going to the meetings, mostly I loved ODAC. I always loved ODAC and I still love ODAC. I haven't missed an ODAC for maybe 40 years or something. And the same goes of course, for NCAB. Basically, here is a discussion as a spectator sport. Oh, wow! I kind of got passionate about this whole thing. Like, covering ODAC like Dave Johnson's ODAC was hilarious. It was a comedy show. Basically, Dave was doing some really cool stuff. Really good material, not really quotable because the jokes were a little loud. Schilsky was hilarious in the ODAC. Raghavan was really funny on ODAC. And then there was Sledge. It was also very, very funny. So, there was this sort of a discussion of this very complicated stuff that I just started quoting. I think I must have quoted Dave's joke. I think you learned from your grandfather, a box turtle on top of a fencepost didn't get there by accident. Dr. David Johnson: It's correct. Paul Goldberg: Yeah, it became an obsession to just follow the characters. Dr. Pat Loehrer: But by the way, Paul, we did interview Rick Pazdur a short time ago, and Rick did not say that Dave was funny. I just want to let you know. There was no comment about that at all. So, there's just another side to this story. Paul Goldberg: Well, the funniest bit was when Derek Raghavan once asked, we need a translator here for southern English, why does it need a box turtle on a fence and it gets there by accident? I don't think Dave explained that that time, but I have to look at my story because I would just get into these digressions of this. I think that was also where Rich Schilsky invented the term, toxic placebo. Dr. David Johnson: Yes, we had a study, we had to review that showed, frankly, that the placebo was actually better in some ways than the actual alleged, like the drug but with a lot of side effects. So, Paul, you've been in the midst of a lot of really interesting stories, some would say controversial ones. ImClone, Pat mentioned earlier, the Duke scandal, where do you get your information? Without divulging. Paul Goldberg: Well, some of them I can't really divulge. But some of them I can. The beauty of the internet now is that people can come up with an email address and send me stuff and I can actually communicate with them, and I don't even have to protect my source because I have no idea who my source is. There was one of these stories you've mentioned, I'm not going to say which one where I could just sort of dial in the question. Like, I could just email this person whose nickname could be Mickey Mouse. I mean, I think that was Mickey Mouse. So, I can just send the question to Mickey Mouse, what happened at XYZ? I'd like to see a picture of XYZ, and then Mickey Mouse would send me something. Dr. Pat Loehrer: This is like all the president's men? Paul Goldberg: It's a lot like that. It's much easier because you don't have to count back or whatever and hang up, although I've done that it's kind of funny. Yeah, sometimes things show up anonymously. Dr. Pat Loehrer: Well, that concludes part one of our intriguing interview with the cancer letter Editor Paul Goldberg. Stay tuned for part two of this conversation, where we'll learn more about the literary works of Mr. Goldberg, who's developed these works outside of the Cancer Letter. We'll see and hear about his incredibly important insight into the Russian Ukrainian conflict and much more. Thank you to all our listeners for tuning into Oncology, Etc. This is an ASCO education podcast where we will talk just about anything and everything. If you have an idea for a topic or a guest you'd like to see on the show, please email us at education@asco.org. Thank you for listening to the ASCO education podcast. To stay up to date with the latest episodes. Please click subscribe. Let us know what you think by leaving a review. For more information, visit the comprehensive education center at education that asco.org. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO the mention of any product service organization activity or therapy should not be construed as an ASCO endorsement.
Join Lori and her guest, Farra Trompeter in this discussion about nonprofit communications and fundraising. Farra is the co-director and member-owner of Big Duck, a consulting firm that helps nonprofits with their branding and campaigns. Stay tuned as she talks about the value of communications in reaching fundraising goals! Here are the things to expect in this episode: People will respond to the passion and joy that they hear in your voice. In this day and age, what marketing and fundraising strategies work for nonprofits? What are some of the big changes right now in fundraising for nonprofits? And many more! About Farra Trompeter: As Big Duck's Co-Director, Farra ensures that Big Duck is a healthy, thriving company—that we're creating a great work environment, are financially stable, producing work that successfully meets or exceeds client's needs, and that diversity, inclusion, equity, and antiracism are centered in all we do. She directs Big Duck's marketing and business development efforts, seeking to build relationships with nonprofits who want to use communications to achieve their mission. Farra has led dozens of organizations through major brand overhauls, fundraising campaigns, and much more since joining Big Duck in 2007. She's a frequent speaker around the country, training nonprofit staff and board members on branding, communications planning, and engaging donors at all giving levels. Farra was born an activist on Long Island, organizing to end hunger, prevent drunk driving, and right other wrongs. She studied psychology at American University where she started and led a public health awareness organization called Students for Healthy Decisions. During the nine years she lived in DC, Farra worked on fundraising and social marketing for the National Breast Cancer Coalition, Planned Parenthood Federation of America, and the Substance Abuse and Mental Health Services Administration. In 2002, Farra moved to San Francisco and dove into the wonderful world of online fundraising with Donordigital. In 2004, she came home to New York to get her Master of Science in Nonprofit Management at The New School and soon joined the team at Douglas Gould and Company to lead online engagement projects. Farra is also a part-time faculty member at New York University Wagner Graduate School of Public Service, where she teaches a class about strategic communications for nonprofit and public service organizations. She previously served as a board member for NTEN, an organization working to create a world where nonprofits fulfill their missions through the skillful and racially equitable use of technology, and for the NYC Anti-Violence Project, an organization that mobilizes lesbian, gay, bisexual, transgender, queer, and HIV-affected communities and allies to end all forms of violence through organizing and education, and supports survivors through counseling and advocacy. Farra is also a member of Big Duck's board of directors. Connect with Farra! Website: https://bigduck.com/ Podcast: https://podcasts.apple.com/us/podcast/the-smart-communications-podcast/id1368653994 LinkedIn: https://www.linkedin.com/in/farra/ Twitter: https://twitter.com/farra?s=20 Organizations mentioned: The Hunger Project: https://thp.org/ Community Centric Fundraising: https://communitycentricfundraising.org/ The Ethical Rainmaker: https://www.theethicalrainmaker.com/ Nonprofit AF: https://nonprofitaf.com/ NYC Anti-Violence Project: https://avp.org/ NTEN: https://www.nten.org/ ICA Group: https://icagroup.org/employeeownership/ Landmark Worldwide: https://www.landmarkworldwide.com/ Students Against Destructive Decisions: https://www.sadd.org/ Melissa Bradly: https://www.linkedin.com/in/melissalbradley/ Connect with Lori Kranczer! Website: https://www.everydayplannedgiving.com/ Facebook Group: https://www.facebook.com/groups/positiveimpactphilanthropy LinkedIn: https://www.linkedin.com/in/lorikranczer/
This week we're exploring a chronic illness that we haven't before, and yet is extremely common - cancer. The lessons from this episode, can easily be applied to any chronic illness though. And we all know or have known someone with cancer. My guest this week is Em Veach who shares her story and what has helped her.In this episode we talk about:metastatic breast cancerways to improve your well-being after a cancer diagnosisa new product for cancer patients from Em's startup, Casual RecoveryGuest Bio:Em Veach is COO of Casual Recovery, a medical device startup. We invented a wearable surgical recovery garment out of necessity. The company founder, Aisha McCain, invented and patented the garment with the support of her plastic surgeon. Now, we are building an all-star team and raising funds to deliver our products to people who need them. Ms. Veach, who is also a cancer survivor, is passionate about helping people and funding research for more effective, less toxic treatments for cancer and other diseases. She is a graduate of Indiana University and trained at the Knight New Media Center as well as the National Breast Cancer Coalition's Project LEAD advocacy program. To purchase from Casual Recovery go to: casualrecovery.comFor Em's podcast and website go to: tenthwind.comFollow Em on Instagram @gertrudeemilyPurchase from The Balm Box at: thebalmbox.com.Follow the show on Instagram @chronically.living_Support the show on Patreon: https://www.patreon.com/chronically_living
It does not take long after a diagnosis of MBC to see that policies and legislation have a tremendous impact on our lives and the resources available to us as we navigate this complex world. In this episode we explore policy and legislation from the perspective of the patient advocate who have made it their mission to cause change. These incredible individuals help break it all down. Joining us are MBC patient advocates Abigail Johnston, Kelli Davis, and Shirley Mertz. They share their experiences with MBC and how they became involved in advocacy. We also hear from leading policy experts who have done outstanding lobbying over the years, Deb Collyer of Patient Advocates In Research, also known as PAIR, Molly Guthrie from Komen, Barry Lenk from Metavivor, Ivis Sampayo of SHARE Cancer Support, and Fran Visco of the National Breast Cancer Coalition. Here are some great stories about the power of advocacy.More info available on our website www.ourmbclife.orgGot something to Share? Feedback? Email: ourmbclife@sharecancersupport.org Send us a voice recording via email or through speakpipe on our website.Follow on Facebook, Instagram, and Twitter @ourmbclife
This BONUS episode is the recording of a lecture given to the National Breast Cancer Coalition on December 11, 2018. It's on clinical trial endpoints, FDA drug approval, and incentives in oncology. Backers of our Patreon will be sent accompanying slides. Back us on Patreon! www.patreon.com/plenarysession
The month of October is National Breast Cancer Awareness Month. It is an effort to raise awareness and reduce the stigma of breast cancer through education on symptoms and treatment methods. Breast cancer has been known since ancient time . With no reliable treatments, and with surgical outcomes often fatal, women tended to conceal the possibility of breast cancer as long as possible. With the dramatic improvement in survival rates at the end of the 19th century it was an individual by the name of William Stewart Halster as he raises long term survival rates 10% to 50%. Such lead to efforts to educate women about the importance of early detection and prompt action. Early campaigns included the "Women's Field Army" which was run by the American Society of the Control of Cancer. They were the forerunner of American Cancer Society. Now we have a wide variety of charitable organizations that are involved in breast cancer awareness and support. The largest and most prominent are Susan G. Komen for the Cure; National Breast Cancer Coalition; states Department I'd Defense; and Breast Cancer Action. Join callers, survivors, current patients and I as we honor and educate individuals about breast cancer. Live 10/22/18 at 12pm Pacific
Rally & Engage - Online Fundraising & Marketing Insights For Nonprofits
On today's episode we talk with Farra Trompeter, the VP of Big Duck (http://www.bigducknyc.com/). During our conversation, we talk about how a year-round communications strategy can improve your fundraising at year-end and practically how do you go about crafting a plan that fits your organization’s goals. SHOW NOTES: *Rally & Engage Interview w/ Farra on Brandraising - https://www.causevox.com/blog/farra-trompeter-nonprofit-brand-strategy-fundraising/ *Mapping Your Donor Communications Plan - http://www.bigducknyc.com/plan-for-engaging-supporters-2016 *[Video] Brand Architecture: Rethinking How You Connect the Dots Between Your Nonprofit’s Brand and Programs - http://nonprofithub.org/brand-architecture/ *Free Fundraising Planning Guide, Calendar Template, & Goals Worksheet ~ https://www.causevox.com/fundraising-plan-calendar/ Farra has led dozens of organizations through major brand overhauls, multichannel campaigns, and much more since joining Big Duck in 2007. She’s a frequent speaker around the country, training nonprofiteers on branding and marketing, online fundraising, and donor engagement. Farra was born an activist on Long Island, organizing to end hunger, prevent drunk driving, and right other wrongs. She studied psychology at American University where she started and led a public health awareness organization called Students for Healthy Decisions. During the nine years she lived in DC, Farra worked on fundraising and social marketing for the National Breast Cancer Coalition, Planned Parenthood Federation of America, and the Substance Abuse and Mental Health Services Administration. In 2001, Farra moved to San Francisco and dove into the wonderful world of online fundraising with Donordigital. In 2004, she came home to New York to get her Master of Science in Nonprofit Management at The New School and soon joined the team at Douglas Gould and Company to lead online engagement projects. Farra serves as Board Chair for Nonprofit Technology Network (NTEN), an organization that believes technology can revolutionize social change. She is also a part-time faculty member at The New School for Public Engagement and New York University Wagner Graduate School of Public Service, where she teaches classes about online engagement and strategic communications for nonprofits. Find more episodes on iTunes (bit.ly/CVpodcast) or our website (www.causevox.com/podcast). Looking for more nonprofit insights? Visit our blog (bit.ly/nonprofit_blog) and see our collection of 400+ posts sharing all things fundraising and marketing. Easily create a powerful fundraising campaign in minutes. Try CauseVox for free! ~ www.causevox.com
Dan Sarewitz joins Heather Ross to chat about his 2016 article in The New Atlantis: "Saving Science From Itself." Dan and Heather talk about the problems with publishing volume and opaque academic language, and why scientists should be more like independent filmmakers. •Guest: Dan Sarewitz •About Dan Sarewitz: http://cspo.org/people/sarewitz-daniel/ •Check out Dan’s article, Saving Science: http://www.thenewatlantis.com/publications/saving-science •Listen to a discussion between Dan and The New Atlantis on SoundCloud: https://soundcloud.com/tnajournal/interview-about-saving-science •Learn more about the Master of Science and Technology Policy program at ASU: https://sfis.asu.edu/mstp-welcome •The Toxic Use Reduction Institute at the University of Massachusetts Lowell examines ways of reducing the use of toxic chemicals. Their work eschews traditional models, focusing on the ‘solution space’ rather than the ‘problem space': http://www.turi.org/ •The National Breast Cancer Coalition is another organization that has looked at different ways of approaching problem-solving: http://www.breastcancerdeadline2020.org/ •In 2014, a White House unit on Behavioral Psychology was formed. Does this represent a changing stance on the relationship between science and policy? http://thepsychreport.com/current-events/head-of-white-house-nudge-unit-maya-shankar-speaks-about-newly-formed-us-social-and-behavioral-sciences-team/
Rally & Engage - Online Fundraising & Marketing Insights For Nonprofits
On this episode we talk with Farra Trompeter about The difference between branding and brand strategy, how your brand strategy should drive fundraising, and how technology is changing how we fundraise and build relationships with supporters. Farra Trompeter is Vice President at Big Duck, a communications firm that works exclusively with nonprofits to help organizations reach supporters, build awareness, and raise money. Farra has led dozens of organizations through major brand overhauls, multichannel campaigns, and much more since joining Big Duck in 2007. She’s a frequent speaker around the country, training nonprofiteers on branding and marketing, online fundraising, and donor engagement. Farra was born an activist on Long Island, organizing to end hunger, prevent drunk driving, and right other wrongs. She studied psychology at American University where she started and led a public health awareness organization called Students for Healthy Decisions. During the nine years she lived in DC, Farra worked on fundraising and social marketing for the National Breast Cancer Coalition, Planned Parenthood Federation of America, and the Substance Abuse and Mental Health Services Administration. In 2001, Farra moved to San Francisco and dove into the wonderful world of online fundraising with Donordigital. In 2004, she came home to New York to get her Master of Science in Nonprofit Management at The New School and soon joined the team at Douglas Gould and Company to lead online engagement projects. Farra serves as Board Chair for Nonprofit Technology Network (NTEN), an organization that believes technology can revolutionize social change. She is also a part-time faculty member at The New School for Public Engagement and New York University Wagner Graduate School of Public Service, where she teaches classes about online engagement and strategic communications for nonprofits. SHOW LINKS: Farra Trompeter on Twitter (https://twitter.com/farra) BigDuck(http://www.bigducknyc.com/) Ebook On Impact of Rebranding For Nonprofits (http://www.bigducknyc.com/rebrandeffect) Find more episodes on iTunes (bit.ly/CVpodcast) or our website (www.causevox.com/podcast). Looking for more nonprofit insights? Visit our blog (http://bit.ly/nonprofit_blog) and see our collection of 400+ posts sharing all things fundraising and marketing.
We are pleased to welcome community organizer and activist Amber Versola to the podcast. Today's discussion included groups that Amber is active in, including the Johnson County NAACP, Greater KC Women's Political Caucus, National Breast Cancer Coalition, and so on.