HealtheVoices Radio

In episode 4, the HealtheVoices Radio co-hosts (Robert Breining, Brady Dale Etzkorn-Morris and Dawn Gibson) will take a look back at Season 3 of the show and reflect and learn from the challenging year since the start of the pandemic. The co-hosts will dive deeper into the topics discussed on this season episode-by-episode, allowing them to reflect on those moments and conversations, and share how their own 2020 experiences have shaped their outlooks on advocacy and life with chronic illness.   The views and opinions expressed by the podcast hosts are solely those of the respective speakers and do not imply and should not be understood to imply the endorsement or recommendation of Johnson & Johnson (or any of its affiliates) regarding any product, item or service.

In episode 3, the HealtheVoices Radio co-hosts (Robert Breining, Brady Dale Etzkorn-Morris and Dawn Gibson) and guests will discuss advice they have for health advocates, and how advocacy has changed over 2020. The hosts will discuss mastering your story, owning your successes, and understanding your audience. They will also dive into how the idea of advocacy has changed in 2020, from the perspective of both new and veteran advocates. Finally, they will talk about how to mentor new advocates, and how to find the next step on your advocacy journey based on the legacy you want to leave behind.

In health advocacy, there is so much that unites us - even as we advocate for different health conditions and across different life experiences. Co-hosts Robert, Brady and Dawn talk with guests Molly Schreiber (Diabetes, RA & POTS Advocate) and Alexis Newman (Diabetes Advocate) about shared experiences across health communities, what it means to be “healthy,” battling stigma, and finding allies, connections and support.  Special thanks to Chelcie Rice (Diabetes Advocate) and the International Pain Foundation (iPain) for our intro. 

In the Season 3 premiere of HealtheVoices Radio, guest Guy Anthony (HIV advocate) joins our hosts Dawn M. Gibson, Robert Breining and Brady Dale Etzkorn-Morris to chat about “Advocacy, COVID-19 & Isolation.” Our panel explores the ways in which online health advocates have been affected by the virus itself and the challenges of social distancing. Special thanks to Chelcie Rice and iPain for our wonderful intro. 

Teresa I. Wright-Johnson is a married Multiple Sclerosis Warrior and Congenital Heart Disease Survivor. She was born with a heart murmur and an Aortic Valve Defect. Teresa has endured multiple open heart surgeries and cardiac procedures. She was diagnosed with MS in November of 2014 and is under the care of an esteemed MS Specialist. Teresa knows there is a calling on her life and she fully embraces that. Teresa uses her illnesses as opportunities to further rely on her faith, walk in her truth, raise awareness and educate others. She believes that she is purposely on purpose. Teresa offers a solid background in Criminal Justice and Social Services. A graduate of Rutgers University in New Brunswick, NJ and a retired Sr. Parole Officer for the State of New Jersey.

Lee was born and raised in a small town in northern Alberta. From a young age they were heavily involved in athletics, student government, and other extracurriculars. However, during their teen years they began battling a mental illness. Feeling scared and alone, Lee struggled silently for many years. Their illness worsened throughout their high school years and continued into university, until Lee finally sought help and began the difficult process of recovery. After Lee began the recovery process, they realized that there were still many people struggling with mental health issues in silence. To reduce the stigma around mental health issues on their campus, Lee founded the #MyDefinition poster campaign in 2014. Since then, Lee has been working as a motivational speaker and mental health trainer, speaking to groups of all ages and sizes about their own mental health experiences, the important of reducing stigma, and LGBTQ+ issues.

Michelle Nguyen is a Business Entrepreneur, Professional Model, Social Media Star, Keynote Public Speaker and Brain Injury Advocate who presents her bittersweet story of overcoming medical obstacles after suffering from a massive Ischemic and Hemorrhagic Stroke at the age of 17 years old.  She promotes disability awareness globally with her genuine enthusiastic personality but she’s not holding anything back after her traumatic injury. By educating, inspiring, and creating about this cause, she has made so many connections and have established herself well in disability (Brain Health) community.  About to launch a non profit, businesses and a book that means a lot to her, she’s thriving into spotlight despite her challenges meeting new beautiful people everyday. Shoot her an e-Mail: michelle.nguyen01@yahoo.com

Danielle Gulden and Joe Teeters are IBD warriors and permanent ileostomates. They’re comedians, speakers, advocates and Two Best Friends without Buttholes! Danielle has had Ulcerative Colitis for over twenty-six years. After going through about every IBD medication available, going to the bathroom twenty to twenty-five times per day, and having a toilet installed in her car, she finally kicked her diseased colon to the curb in 2007.  Her ostomy (and her stoma named Stella) saved her life and gave her back her life! Joe has been living with Crohn’s Disease for over twenty-six years. Like Danielle, he has run the gamut of medical treatments and medications. He has had a total of four intestinal surgeries and two resections. In 2012, he underwent a total proctocolectomy with end ileostomy. That surgery landed him a spot alongside Danielle in the “Barbie Butt” Club! What’s that you ask? Two cheeks, no hole, that butt is just for show! Danielle and Joe use their humor, wisdom, and stories to connect with and support other people living with ostomies and Inflammatory Bowel Disease!  They believe in the power of humor, advocacy and awareness! 

Danielle Gulden and Joe Teeters are IBD warriors and permanent ileostomates. They’re comedians, speakers, advocates and Two Best Friends without Buttholes! Danielle has had Ulcerative Colitis for over twenty-six years. After going through about every IBD medication available, going to the bathroom twenty to twenty-five times per day, and having a toilet installed in her car, she finally kicked her diseased colon to the curb in 2007.  Her ostomy (and her stoma named Stella) saved her life and gave her back her life! Joe has been living with Crohn’s Disease for over twenty-six years. Like Danielle, he has run the gamut of medical treatments and medications. He has had a total of four intestinal surgeries and two resections. In 2012, he underwent a total proctocolectomy with end ileostomy. That surgery landed him a spot alongside Danielle in the “Barbie Butt” Club! What’s that you ask? Two cheeks, no hole, that butt is just for show! Danielle and Joe use their humor, wisdom, and stories to connect with and support other people living with ostomies and Inflammatory Bowel Disease!  They believe in the power of humor, advocacy and awareness! 

Dave Bexfield is the founder of www.ActiveMSers.org, a website designed to help, motivate and inspire those with multiple sclerosis to stay as active as possible—physically, intellectually and socially—regardless of physical limitations. Established when Dave was diagnosed in 2006, ActiveMSers is today the largest and longest-running personal MS website, and has helped hundreds of thousands of people with MS from around the world through its encouraging website, blog, Twitter feed, Facebook page, Instagram pics, YouTube videos and discussion forum. His motto: Be active, stay fit and keep exploring!

Shenese Colwell is the owner/founder of labworksandfitness and a bariatric lifestyle coach & obesity advocate. Her passion for helping clients reach their fitness goals and offer support for thier lifelong journeys is evident in her continuous pursuit of knowledge and support in the field of nutrition, fitness, and motivation. Shenese has certifications with the National Academy of Sports Medicine and the American College of Sports Medicine. She's also a member of the Obesity Action Coalition and Exercise is Medicine.

Listeners, please note that this episode of HealtheVoices Radio discusses suicide. If you or a loved one is in crisis, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text 741741 for the Crisis Text Line. Stupid Dumb Breast Cancer is Ann Marie Giannino-Otis’ fierce and unconventional initiative to promote awareness, early detection, and advocacy, with a special focus on how the disease impacts younger people. On behalf of her organization, Ann Marie has been featured in area publications, appeared on TV, local radio, and Huff Post Live, and hosts a series of monthly events. Since its inception in 2012, Stupid Dumb Breast Cancer has raised and contributed over $750,000 to a variety of breast cancer organizations, including Stand Up to Cancer, Duke Hospital, Wilmot Cancer Center, the Upstate Cancer Center, CancerConnects, Personal P.Ink and the Maureen’s Hope Foundation. Ann Marie communicates regularly with a growing network of patients, their loved ones, and supporters via a variety of social media, where she candidly shares her thoughts and experiences, and welcomes others to join the conversation, discover their own strengths, and discuss their journeys.

For two decades, Alisha M. Bridges lived in shame with psoriasis, a severe auto-immune disease. Now, she strives to inspire others by unapologetically living her best life in spite of her chronic illness. In 2011 she stumbled into psoriasis advocacy  when she wrote a blog entitled, “My Suicide Letter” on an online psoriasis support group. It contained a message not about physical death, but the end of the scared little girl inside of her who was controlled by shame and lacked self-confidence, due to the stigma that accompanies a visible chronic illness. Since then this blog has been viewed over 50,000 times. Now an award-winning writer, public speaker, media consultant, health activist, comedian enthusiast, and fashionista, Alisha travels the world educating people on living a fulfilled life despite chronic illness. She advocates on behalf of patients to bridge the gap between the medical community and patients living with chronic disease. 

Tiffany Kairos is the founder of The Epilepsy Network (TEN) Organization, a blogger, and an advocate with over 8 years of experience. Having lived with epilepsy for more than a decade, Tiffany is on a journey to share her story, help those who have been impacted by epilepsy find their voice and bring about education and awareness for all. In the Season 2 premiere, hosts Robert and Brady learn all about life with epilepsy, the ways Tiffany finds purpose in her platform, and how she and her husband, Chris, have become an unbeatable team. (Be sure to listen to hear what's on Tiffany's reading list, but she also highly recommends "The Power of Positive Thinking" for fellow bookworms!) 

Kamaria Laffrey is living with HIV and Black Girl Magic and lives life out loud as an advocate, speaker, and consultant. Her current focus is working on HIV justice to change laws that criminalize people living with HIV. Since her diagnosis, her personal goal is to work through her developing community-based organization, emPOWERed Legacies and provide tools that will help communities towards embracing healing, giving inspiration and living victoriously beyond their diagnosis. Kamaria is also a pround Positively Fearless Ambassador.

Meg Johnson is an Inflammatory Bowel Disease and ostomy advocate and know  across social media platforms such as YouTube, Instagram, Facebook, and Twitter as "The Front Butt Youtuber".  She began to make YouTube videos due to the lack of accessible information on & around care for ostomies. There were a few people who paved the way to talk about IBD and ostomies openly, but there were still wide open gaps that needed to be addressed. So, she  hit record on a camera and started making content for ostomates by an ostomate. In doing so, she has made many connections and have established herself well in the community.    

Kyle went to Columbia College Chicago for film directing but has enjoyed the past nine years in Los Angeles working in the Art Department. In October 2012, he felt two small lumps on his right testicle. Two days later, he ran a marathon. One week later, he had the cancerous testicle removed. One year later, in attempts to make sense out of all this, he founded CHECK 15: The Monthly Cancer Awareness Day. CHECK 15 creates a new cancer awareness PSA on the 15th of every month with the goal of fighting cancer through early detection and lowering risk - all delivered with a healthy dose of humor. As of January 2019, they’ve achieved 62 straight months of videos.

You’ve heard from HealtheVoices advocates about their individual journeys. Now hear about the journey of HealtheVoices as a movement—how we got started and how we’ve grown, in celebration of five years of HealtheVoices. Featuring program sponsors and partners, alongside advocates who’ve helped to grow this community from its start, this is a look inside what makes HealtheVoices so special—the advocates themselves. Guests include past advisors, speakers and attendees, Brooke Abbott, Megan Starshak, AnnMarie Otis, Gabe Howard and Dawn Gibson, alongside Caroline Pavis of Janssen and Laurel Netolicky of WEGO Health.

Currently in his final semester of Pharmacy School, Dakota J. Rosenfelt is a nationally-recognized public speaker and advocate for patients, like himself, living with hemophilia A or other bleeding disorders. Dakota serves as a Youth Advisory Member on the board of the Midwest Hemophilia Association and acts as the liaison between the younger members of the community and the Board. He is highly involved in the bleeding disorders community on both the local and national scale and understands firsthand the complexity of living with a bleeding disorder. Dakota is the Executive Director and Founder of Click& Go App Designs, Inc., a 501(c)3 nonprofit charity which helps improve patient outcomes by creating digital solutions to improve patient adherence. His original project, HemoTool, allows patients to track their treatments, order medications from their specialty pharmacy, and find treatment while on the go. 

Eileen Davidson always knew about arthritis, her grandmother and aunt had it. She never really understood her grandmothers need for double knee replacement surgery or her aunt's true reason for her wheelchair until Eileen was also diagnosed with Rheumatoid Arthritis at 29. Having to kiss her late 20s goodbye was only the beginning, Eileen ended up losing her ability to work as an esthetician. By the time her pain was taken seriously, she was eligible for long-term disability. Devastated by the tolls arthritis was taking on her life, matters only got worse when she received a diagnosis for Osteoarthritis. Having to come to terms with both her RA and OA diagnosis, Eileen decided to fight this invisible enemy, not just for herself, but for her young son, Jacob, whom she is the single mother of. After more than a dozen medications, including biologics, and a healthy dieting leading to 60 lbs loss, she has finally found some relief. It also prepared her for her diagnosis of Fibromyalgia. Eileen wants to share the benefits of living a healthy lifestyle to those struggling with chronic pain and fatigue. She is passionate about creating awareness for arthritis. In late 2016, she became an ambassador for The Arthritis Society and created blog www.chroniceileen.com. Within one year she has been published in Reader's Digest Canada, Inked Magazine, written for Healthline and The Mighty. Everyday Health recognized her blog as one of the top ten arthritis blogs, she isn't near finished. Patient advocacy has given Eileen a new outlook on life and keeps her moving forward. Her goal is to help those struggling with chronic illness to live better, healthier lives. Arthritis Research Canada plays a major role in that.

Barby Ingle is a best selling author, reality personality, and lives with reflex sympathetic dystrophy (RSD), migralepsy, endometriosis and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. Her blog, reality shows and media appearances are used as a platform to help her become an ePatient advocate, and she now travels the country attending healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe. She has received 19 accommodations over the years for her advocacy work including; 2011 iPain Hero of Hope Award, 2012 WEGO Health Ms. Congeniality, 2012 NAF You Are Our Hero Award, 2013 International Inspirational Luminary, 2015 IDA Impact Award, and 2016 WEGO Health Lifetime Achievement. In 2017, Barby was named a Health Information Technology Top 100 Influencer by HealthScene and Top 20 Health Influencer by Insider Monkey Magazine. In 2018, Barby received the Reality All Star Reunion Superstar award for Most Social Media posts and Top 50 Chronic Pain Advocates. In Feb. 2019, Barby is listed in the top 100 social media advocates for Rare Diseases.