Podcast appearances and mentions of seth rotberg

Episode 33 -- Patient Perspectives: Smell & Taste, Genetic Diseases, Cancer, and Multiple MyelomaIn this episode of "The Patients Speak" podcast, host Mark Stinson engages in insightful interviews with four inspiring individuals who share their experiences as patients and advocates in different health conditions.· Katie Boateng, head of the Smell and Taste Association of North America, discussing the importance of understanding the impact of smell and taste conditions on patients' daily lives.· Seth Rotberg, an HD (Huntington's Disease) patient advocate, emphasizes the need for genetic counseling and collaboration between patients and clinicians in the treatment and research of genetic and rare diseases.· Howard Brown, a two-time cancer survivor and author, shares his journey of resilience and hope in his memoir "Shining Brightly." He highlights the importance of forming a collaborative team and maintaining optimism while dealing with cancer.· Yolanda Brunson Sarrabo, a multiple myeloma patient advocate, emphasizes the significance of patient empowerment and effective communication with healthcare providers. She encourages patients to ask questions, express emotions, and consider participating in clinical trials.Here are key quotes from each guest:1. Katie Boateng:"People want others to understand the enormous impact that smell and taste conditions have on their day-to-day lives. There seems to be a lack of empathy or understanding for how impactful these conditions can be."2. Seth Rotberg:"Genetic counseling is becoming more prevalent and important to know about the next steps. It's crucial to have the right resources and support when facing genetic and rare diseases."3. Howard Brown:"You gotta get up out of bed every day and push further and keep going. It's okay to sleep in bed one day; you gotta get back up the next day. Keep moving."4. Yolanda Brunson Sarrabo:"Everyone isn't a public speaker, but you can write down questions and use the nurses and healthcare team as resources. We need providers and researchers to find us, as there is a diverse range of patients with unique perspectives."Tune in to this enlightening episode as patients share their insights and advocate for better understanding and communication within the healthcare system.(c) 2023 BSB Media

Advocate Perspective on Prilenia with Seth Rotberg

Although people dealing with rare diseases may be few, they all share a common humanity with the broader population that must be considered when designing trials. In this episode, Seth Rotberg, co-founder of Our Odyssey, talks about his journey with Huntington's disease and his take on how clinical research could improve the experience of the patient community. He shares the story of his mother's misdiagnosis and how he discovered he was a disease carrier, discussing how the clinical research space can repair its reputation and create a trusting relationship with the community. Tune in to learn more about the roller coaster Seth has gone through and the lessons he is sharing from his ride! Click this link to the show notes, transcript, and resources: outcomesrocket.health

Welcome back to our podcast The Patients Speak. Today we're going to hear the story and the journey of a very special guest, Seth Rotberg. Seth has been diagnosed with Huntington's disease (carrying the gene for it) and has become a patient advocate for genetic testing, in general, for many rare conditions.Seth is more than just a patient advocate – he is the co-founder of a non-profit Our Odyssey, is an award-winning speaker, and helps make a difference in the community by immersing himself in the patient perspectiveIn our interview with we discuss with Seth:The role of a patient advocateThe role patients play in participating in Clinical Trials Seth's Call to ActionSeth's mission statement: "Live as if you were to die tomorrow, learn as if you were to live forever."Seth saw his mom go through Huntington's disease for 17 years of his life and it slowly deteriorated her, both physically and mentally. “It was like watching someone on an island, where the water continues to go up and up and up, and there's nothing for you to do besides just watch.” Role of a Patient AdvocateGenetic Testing: Planning and preparing for his life ahead. Whether it's a future family, career setting, understanding what may happen if there's not a treatment in time.Genetic Counseling: Offering resources and support Symptom hunting - “Is this a symptom of my disease?”Survivor's guilt - “If I tested negative, and having a sister who's at risk and what is that going to make me feel like?”First 3 Steps: Actively listeningLearning Implementing a planner strategyClinical Trials and Community Development and Participation:Community outreach to patient advocacy organizationsconnect you with other community members and gathering insighthaving multiple meetings with these different community members, patients, caregivers, and key opinion leadersunderstanding what are the different perspectives and honing in on what are the challenges of the community, and then how can we potentially help it?Work closer with patient advocacy organizationstrial awarenesstrial educationmaking sure the community knows that this is an option.Call to Action "Let's listen to them. Let's understand them better, and then we can try to find ways to work together with them."Treating us as partners and as patientsMake sure that you are truly working side by side with the community you're trying to serve. Build trust in those relationships and being transparentLearn from other community members, bring them in, whether it's through a lunch and learn, or speak engagement, or attending conferences It was truly engaging and insightful talking with Seth Rotberg today. We hope you enjoy this interview today and to learn more about Seth's journey and patient advocacy go to www.sethrotberg.com Also, be sure to check his Tedx talk and watch his FULL STORY. @srotberg15 on Instagram Thanks for listening to our podcast.Subscribe now so you won't miss an...

Seth Rotberg is a patient advocate, community connector, and motivational speaker. His passion is driven by his mother's 17-year battle with the rare, genetic disease known as Huntington's Disease (HD). Through his 13 years of experience navigating the healthcare system, he's worked with different healthcare stakeholders including: patient advocacy organizations, patient influencers, pharma/biotech, genetic counselors, and healthcare recruitment companies. Seth has a master's in nonprofit management from DePaul and currently resides in Chicago. Watch his TEDx here: https://www.youtube.com/watch?v=5_O5TfMVqD8 and follow him on Instagram here: https://www.instagram.com/srotberg15/

After watching his mom succumb to Huntington's Disease, a rare genetic neurological disorder with no treatment and no cure, Seth, at age 20, decided to see if he carried the gene. The test results came back positive. He shares what it's like to live with this knowledge and how he tries to balance holding onto hope for a different future with accepting the brutal reality of his situation. In the meantime, he is not waiting around for treatment of a cure for HD. He is pushing the needle forward and advocating for others like himself. He is a gift to humans.

CHDI is currently having their HD Therapeutics Conference! HDBuzz has been reporting via live tweets on Twitter - they've done a great job in sharing the research. Seth Rotberg and Lauren Holder have been following along, and give a review.

Hey Peeps! Welcome back to another episode of the Because We are Strong Podcast, where we sit down every week to hear the untold stories of those in the rare disease and chronic illness community. This week we are sitting down with Seth, a rare disease fighter who founded Our Odyssey, a foundation that connects young adults who have rare diseases with emotional and social support.Connect With Seth:To learn more about Our Odyssey head to www.ourodyssey.orgTo learn more about WEGO Health head to www.wegohealth.com and sign up for your account today!People can follow me on Twitter/Instagram @srotberg15_____________________________________________________ That's why the BC Schizophrenia Society has launched a brand new podcast, called Look Again, Mental Illness Re-examined. Host Faydra Aldridge talks to doctors, families, and people with lived experience about how to recognize mental illness, and the specific treatments that can help. Check it out. They'll really challenge you to“look again” at what you think you know about mental illness. Support the show (https://www.patron.com/findyourrare)

Seth Rotberg joins the podcast to talk through the in's and out's of patient advocacy, the patient's role in drug development, and how patients can work with regulators to make sure the best possible medications reach approval. Since Gunnar considers himself a patient advocate, too, they are able to talk about their frustrations with the role, but more important the impact they think patient advocates can have inside the health industry. Seth talks to Gunnar about the frustration that some drug developers have had with taking on Huntington's Disease, while Seth also shares that he has some frustration with how drugs are evaluated for efficacy in Huntington's Disease clinical trials. Learn more about your ad choices. Visit podcastchoices.com/adchoices

In this episode, Kyle and Jeremy interview Seth Rotberg. is a disciplined exerciser and “social” athlete, an avid sports fan, TEDx Speaker, and a businessman in the healthcare nonprofit space. As a young man of 30, who tested positive for HD ten years ago, his mission is to ensure that his peers in the rare disease community develop strong social and emotional supports, through in-person and virtual meet-ups, as well as friendships “off-line.” We talk about how Seth deals with the unknown, how to let go of wanting to control, and how to live on hope. Enjoy! Where to find Seth Rotberg: @SRotberg15 (https://www.instagram.com/srotberg15/?hl=en) Follow us, ask us questions, and submit podcast ideas: @Social_Anxiety_Kyle (https://www.instagram.com/social_anxiety_kyle/) @JeremyTalksToStrangers (https://www.instagram.com/jeremytalkstostrangers/) Check out our website and stay up-to-date on everything we are doing: www.TheSocialNinjasPodcast.com Make sure to leave us a 5-star review! Support The Social Ninjas Podcast via our Patreon here. https://www.patreon.com/thesocialninjas

Seth Rotberg joined the HD Insights Podcast for this episode. Seth is a patient advocate, community connector, and motivational speaker who is passionate about bringing his personal experience to support the health community. His passion is driven by his mother's 17-year battle with the rare, genetic disease known as Huntington's Disease (HD). Five years after learning about his mother's diagnosis, Seth went through genetic testing and found out he tested positive for HD and may end up like his mom one day.  In 2019, Seth co-founded the nonprofit, Our Odyssey, to provide year-round social and emotional support to young adults impacted by a rare or chronic condition. He has a master's in nonprofit management from DePaul and currently resides in Cambridge, MA. Professionally, he works as the Patient Leader Recruitment Manager at WEGO Health. To learn more about Seth, visit https://www.sethrotberg.com. For more information about Our Odyssey, go to https://ourodyssey.org. 

On the show today, we are talking all things adolescent and young adult (AYA) rare disease. Back when I was CEO at Stupid Cancer, we’d always say that AYA cancer was not better or worse, just different. And the same holds true for this community. Joining me is Seth Rotberg, a very vocal leader in the AYA rare disease community and the Founder of Our Odyssey. Seth lost his mother to Huntington’s Disease several years after she was initially diagnosed while he was in High School. He also tested positive for the disease along the way, bringing challenges and opportunities to the life in front of him. His mission is to provide support and resources to the AYA rare disease community to help them reach their full potential. Enjoy the show.

To learn more about the show, Sharing about Caring, go to the following site: https://sharingaboutcaringpodcast.wordpress.com/To contribute to an upcoming episode or to share feedback, please email me, Carlos Briceño, at sharingaboutcaring@gmail.com.I am grateful for the following: In this episode, Kate Washington, a journalist, reads two excerpts from her book, Already Toast: Caregiving and Burnout in America. We also hear from Patricia Hoolihan, who reads excerpts from her book called Hands and Heart Together: Daily Meditations for Caregivers. You can learn more about her here: https://patriciahoolihan.wordpress.com/You also hear from Debra Kelsey-Davis and Kelly Johnson, the authors of The Caregiver's Companion: A Christ-Centered Journal to Nourish Your Soul, as they read an excerpt from the book. Here is more about their organization: https://nourishforcaregivers.com/Seth Rotberg reads a letter he wrote to his mom, who battled Huntington's disease for 17 years. You can learn more about him here: https://www.sethrotberg.com/ and the organization he co-founded: https://ourodyssey.org/You can read about Lousin Mehrabi's journey in facing her son's battle with Duchenne Muscular Dystrophy here: https://www.linkedin.com/pulse/lessons-helped-me-deal-toughest-hardship-my-life-lousin-mehrabi. She reads a poem in the episode to share how she is dealing with her son's battle. Here is the credit for some of the music used in the episode:Music from Uppbeat (free for Creators!):https://uppbeat.io/t/richard-smithson/search-lightLicense code: HJTBMFDWCUFYDIVDMusic from Uppbeat (free for Creators!):https://uppbeat.io/t/locran/piece-yourself-back-togetherLicense code: 1EGLDCUGVMBDWD9LMusic from Uppbeat (free for Creators!):https://uppbeat.io/t/richard-smithson/always-risingLicense code: 96DZBN2LSSUWTMWPMusic also used from Mixkit Sound Effects Free License Hosted on Acast. See acast.com/privacy for more information.

Seth Rotberg, Patient Recruitment Manager at WEGO Health & Co-Founder of Our Odyssey, shares his views on how to empower rare disease patients, improve clinical trials, and move towards a truly patient-centric practice. He also discusses how and why Pharma should leverage social media and patient “influencers” to reach more patients.Schedule a meeting with Natalie Yeadon: https://www.meetwithnatalie.comNatalie Yeadon LinkedIn: https://www.linkedin.com/in/natalieyeadon/Impetus Digital Website: https://www.impetusdigital.com/Impetus Digital LinkedIn: https://www.linkedin.com/company/impetus-digital/Impetus Digital Twitter: https://twitter.com/ImpetusadboardsImpetus YouTube: https://www.youtube.com/ImpetushealthcareSeth Rotberg: https://www.linkedin.com/in/sethrotberg/WEGO Health: https://www.wegohealth.com/Our Odyssey: http://www.ourodyssey.org/

This week, Kip walks with Seth Rotberg along the Charles River in Cambridge. Seth talks about discovering his mother’s Huntington’s Disease (HD) diagnosis at 15 years old and subsequently learning that he too, carries the gene that will lead to him developing HD at some point in his future. Seth explains how this experience, which at times is very isolating, led him to seek out support and connection in the HD and broader rare disease communities. As a result, Seth went on to found a non-profit organization dedicated to serving those struggling with rare and chronic conditions to provide emotional and social support. Kip and Seth also share their thoughts around vulnerability, judgement, fear, and embracing the present moment. Seth Rotberg is Co-Founder of Our Odyssey, a non-profit established in 2019 to improve the quality of life for young adults with rare or chronic diseases. For more information about Seth and Our Odyssey, you can visit: https://ourodyssey.org/

ONCE UPON A GENE - EPISODE 064 Seth Rotberg Founder of Our Odyssey and His Mental Health Surrounding a Huntington’s Disease Diagnosis  Our Odyssey is an organization that supports young adults living with rare disease and chronic illness. The founder of Our Odyssey, Seth Rotberg, is passionately driven by his mother's battle with a rare genetic disease called Huntington's Disease (HD). At the age of 20, he also tested positive for the disease. He dedicates his life to helping others on their rare disease journey and chronic illness. EPISODE HIGHLIGHTS What is your connection to the rare disease world? My story started at age 15 when my mom was diagnosed with Huntington's Disease (HD), a rare neurological disease that slowly deteriorates a person's physical and cognitive abilities for which there's no cure. I was fortunate to have a good support system at the time, but no one understood what it meant to be a young adult with a family member impacted by a rare disease. I didn't realize initially that I could also be a carrier of the disease and later found out in college that I was at risk. It impacted me mentally wondering if I had it and I finally got tested so I could plan for my future. I went through genetic testing and tested positive for Huntington's Disease which means I'm not technically diagnosed or currently living with the disease, I'm a gene carrier. Knowing what Huntington's Disease did to my mom, I'm preparing for that happening one day. How fast did your mom's disease progress and were you at all involved in her daily care? For years my mom was treated for depression and mood swings, but the other aspects of wobbly movements, poor balance, slurred speech and other cognitive and behavioral effects of the disease. We had a family intervention with my mom and suggested she be checked into a mental health facility. After some testing and further evaluations, it was discovered Huntington's Disease. My dad was her caregiver for 17 years and I helped out, taking on additional responsibility at home. I had to grow up a lot faster than my friends and I went through a lot as a young adult. When you got your test results back that you were in fact a carrier for Huntington's Disease, what were your next steps? I thought a lot about what it meant for me and my future and who to tell. I didn't tell my parents for three years because I didn't want my mom to feel guilt when she was already suffering. I was fortunate to have a friend from the HD community with me when I got my results. She was also a young adult who understood and she was there for me. I tried to carry on like the results were not a big deal, but realized over time that it was a part of me and was part of my story. Did you feel freedom when you shared your test results with friends and family? Telling people lifted a large amount of weight off my shoulders. I told most people by way of a local newspaper article. What shifted my mindset to tell people was two major life experiences of a good friend passing away unexpectedly in an accident and another friend passing from an ultra rare form of juvenile Huntington's Disease. I realized from this that they lived in the moment and shared their stories and that there was an opportunity to share and help others. How did you arrive to the point of starting Our Odyssey? It was because there was an unmet need. I never thought I'd start a nonprofit, but I realized there was a need for young adults living with rare disease. We wanted to help young adults throughout the year, aside from annual events to stay connected and network with others who get it. I was at a rare disease week, talking to young adults about it and there was a lot of interest in putting it together.  What's your most profound accomplishment? The first is doing a TEDx talk in my hometown, speaking to people afterwards and realizing the power of storytelling and the impact on the community. The other accomplishment was being awarded by the Boston Celtics as the Hero Among Us, which they award at every home game to someone doing work in the community. LINKS AND RESOURCES MENTIONED EPISODE 048 - What is Chronically Surviving with Marcelle Longlade https://effieparks.com/podcast/episode-48-chronically-surviving EPISODE 036 - Anna Laurent on Alagille Syndrome and Her Road to Advocacy https://effieparks.com/podcast/episode-36-anna-laurent-alagille-syndrome Our Odyssey https://ourodyssey.org/ TEDx Navigating Genetic Disease Testing: A Personal Story https://www.ted.com/talks/seth_rotberg_navigating_genetic_disease_testing_a_personal_story TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/

Seth Rotberg, the Co-founder of Our Odyssey, joins the podcast to talk about the work Our Odyssey does to help connect young adults with rare chronic conditions.

EPISODE SEVEN of Change Makers with our special Guest being Seth Rotberg to talk of his work inspiring people to embrace the moment and live in the moment.Please Join us a 6:00pm ET on Wednesday, October 28th.This show will be Hosted by Anthony Russo, but we will allow for this amazing guest to do the bulk of the talking and tell their amazing story. This is going to be a bit of a cathartic episode as both Anthony and Seth have experience dealing with disability and Huntington's Disease.Seth is a patient advocate and motivational speaker who is passionate about bringing his personal experience to better support the health community. His passion is driven by his mother’s 17-year battle with the rare, genetic disease known as Huntington’s Disease (HD). Throughout his lifelong odyssey of overcoming this adversity, he came to understand something profound about the meaning of life. Now he dedicates his life to helping others along their odyssey of facing adversity or roadblocks in life.We will be having a 45 minute (ish) show with Seth to talk about how he has made it his life mission to create change.#BeTheChange #StreetlightsUnityMovement***Make sure if you miss this and want to just listen via podcast go to https://www.hashtagbethechange.com/podcast to find all the #BetheChange Podcasts. Please remember to subscribe on your chosen platform!Learn more about Seth Rotberg and about Our Odyssey: https://sethrotberg.com/https://ourodyssey.org/Subscribe to the official #BeTheChange pages:https://www.facebook.com/BeTheChangeUSAhttps://www.youtube.com/c/bethechangeusahttps://twitter.com/BETHECHANGE_USAhttps://www.instagram.com/bethechange_usa/Learn more about Anthony Russo and how you can be a part of the Movement:https://www.hashtagbethechange.com/Support the #BeTheChange Podcasts through the Patreon page below:https://www.patreon.com/BeTheChangeUSA?utm_medium=social&utm_source=facebook&utm_campaign=creatorshare&fbclid=IwAR3N4knxOVpVLrQ59StRi3Tos1FxitHlgKeC3EC2EWKQer1jljfXEYsdzwU

As a global community, we’re living through unprecedented times. But what does COVID-19 mean for people living with rare diseases? Neena Nizar and Seth Rotberg are rare disease advocates, both living with rare diseases themselves, and are here to provide some insight. In this episode, they discuss the impact of the pandemic, both in their present-day lives and for the future of the entire rare community.

Dr. Daria Julkowska joins the show for Rare Disease Month as the Coordinator of the European Joint Program on Rare Diseases. This organization was newly established in January 2019. Daria is of Polish origin but she has lived and worked in France for the last 18 years. She has a PhD in molecular biology and is involved in rare diseases research and management for the last ten years.The European Joint Program on Rare Diseases represents 89 partners across the EU and beyond. Internally, the partners include research funders, research institutions and infrastructures, hospitals and of course patient organizations. The program is financed by the EU and the states participating in the project.On This Episode We Discuss:Motivation to Start the OrganizationGoals for the Rare Disease CommunityCountries RepresentedRare Disease Visual PlatformAdvancing Rare Disease ResearchOngoing Research ProjectsFunding for ResearchCombating Exorbitant Costs of Treatments (Ex: Spinraza)Rare Disease Day/Month InvolvementHappy Rare Disease Month! If you are in the US you can get involved by going to the National Organization for Rare Disorders’ website, rarediseases.org. You can find ways to get active on social media and in person events. Learn more about The European Joint Program on Rare Diseases by visiting their website.Want to hear more from the rare disease community? Check out all the 20 rare disease episodes of DNA Today here! Recent episodes include #102 Seth Rotberg on Huntington Disease, #98 Lydia Seiders on Aplastic Anemia, and #95 Kieger Family on Familial Adenomatous Polyposis.Stay tuned for the next new episode of DNA Today. New episodes are released on the first Friday of the month with some bonus episode thrown in there. See what else I am up to on Twitter, Instagram, Facebook and iTunes. Questions/inquiries can be sent to info@DNApodcast.com.

Seth Rotberg and Kristina Wolfe have each felt the isolation of entering adulthood in the shadow of rare and chronic disease. Rotberg, whose mother was diagnosed with Huntington’s disease, had genetic testing as a college student that showed he too will develop the neurodegenerative condition. Wolfe has grown up with type 1 diabetes. The two founded Our Odyssey to help young adults connect, find social and emotional support, and help them improve their quality of life. We spoke to Rotberg and Wolfe about their own experiences, why they created Our Odyssey, and the unique psychosocial issues people with rare and chronic diseases face in transitioning to adulthood.

In this episdode, we met with co-founders, Seth Rotberg and Kristina Wolfe, to discuss their newly founded organization called Our Odyssey. The foundation serves the needs of young adults living with rare and/or chronic conditions. Together, Seth and Kristina have a vision for meeting the overall needs of this niche community within the rare and chronic healthcare space. This is an information packed episode - enjoy! For more information on Our Odyssey, visit them at www.ourodyssey.org.

Seth Rotberg, a rare disease patient advocate and motivational speaker, joins the show to share his perspective on Huntington Disease (HD).From 2011 – 2015, Seth served on the boards for the HDSA National Youth Alliance (NYA) and HDSA Massachusetts Chapter to continue his efforts in the HD community. He became the President of the HDSA NYA in 2012 and HDSA Massachusetts Chapter in 2013, where he led a group of dedicated volunteers to plan and execute fundraising and educational events.Seth is still an active member of the Huntington Disease community and currently sits on the Board of Trustees for the Huntington’s Disease Youth Organization (HDYO). As a member of the working board, he connects young people to the proper social, emotional, and educational resources needed when coping with HD. His hope is to be a mentor for young people who face adversity by sharing how taking control of his HD journey has given him opportunity, fulfillment, and hope.On This Episode We Discuss:-How Huntington Disease Affects the Body and Mind-Seth’s Journey with Huntington Disease-Seth’s Family’ History and Experience with Huntington Disease-Genetic Testing Process and Seth’s Advice-Importance of a Support System-Inspiration Behind Seth Becoming a Patient AdvocateTo read and hear more from Seth check out his website, follow him on Twitter, watch his TED Talk and listen to his own podcast, Rare Unplugged.Stay tuned for the next new episode of DNA Today. New episodes are released on the first Friday of the month. See what else I am up to on Twitter, Instagram, Facebook and iTunes. Questions/inquiries can be sent to info@DNApodcast.com.

After years of misdiagnoses, Seth Rotberg’s mother was finally diagnosed with Huntington’s Disease (HD) when he was 15 years old. At the age of 20, Seth had genetic testing and also tested positive for HD. Initially, Seth stayed in the “genetic disease closet,” telling only close friends about his positive test results and waiting 3 years to tell his father and sister. The loss of two close friends at a young age shifted Seth’s perspective, inspiring him to open up about his positive genetic testing results, to strive to live fully in the present while hoping and working toward a brighter future and a cure for HD. Story Reference Points: What is Huntington’s Disease (HD)? @ 1:45 Seth’s mother is diagnosed with Huntington’s Disease @ 4:07 Seth has genetic testing done for HD at age 20 @ 14:22 Why Seth wishes he’d had genetic counseling before HD testing @ 18:44 Seth seeks out genetic counseling 6 years after testing @ 23:25 Seth becomes involved with HD support organizations @ 25:04 Seth loses a close friend in an accident @ 27:25 HD and research @ 31:52 The genetic disease closet @ 35:00 HDYO, HDSA, and HD Buzz as resources @ 36:55 Misconceptions surrounding HD @ 39:49 Links and Resources Seth’s website Seth’s TEDx talk HD Resources: Huntington’s Disease Youth Organization Huntington’s Disease Society of America HD Buzz Connect with Seth on Social Media: Seth on Twitter: @Srotberg15 Seth on Instagram: @Rotberg15 Watch for Seth’s upcoming interview on the DNA Today Podcast Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page Do you want to support Patient Stories? You can now make a donation online! Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media. Patient Stories on Twitter: @GreyGeneticsPod Patient Stories on Instagram: @patientstoriespodcast Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. Choose from our growing Network of Genetic Counselors. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone. Check out our new family history review services here

Happy Genetic Counseling Match Day! Today we are celebrating the genetic counseling graduate program match day by discussing how to prepare and what to expect during the first year. We also provide advice for applicants that didn’t match in this cycle and offer inspiration to apply next round.In a way this is a follow up episode from the application process discussions. If you are thinking about or planning on applying to genetic counseling grad schools check out those episodes. Episode 87 was the first part of this conversation where we discussed how to gather the experience and classes to have a competitive application. We also surveyed over 50 incoming genetic counseling students (enrolling Fall 2018) who went through the last application process, which was also the first time the Match System was used. In episode 97, the panel discussed the second portion of the application cycle: interviews, ranking, and matching.On This Episode We Discuss:Classes to Take to Fulfill Prerequisites before EnrollingManaging the FinancesLoans, Financial Aid, Budgeting, and JobsExtra Steps for International StudentsHealthcare, Visa, MovingFinding Housing and RoommatesFirst Year ClassesRotationsDisability and Genetic CounselingThesisStudent Mentor ProgramThe PanelKarl Krahn is a first year genetic counseling student at Sarah Lawrence College. He earned his BS in Biology from the University of the Fraser Valley in Abbotsford, British Columbia, Canada at the end of 2017. During his undergraduate career, Karl performed research in bioethics at UFV and research on food systems in Nairobi, Kenya at Aga Khan University. He volunteered at a genetic counseling office and was a mentor for his community’s youth mentorship program. His professional interests include, oncology, variant research, and, his personal favourite, the murky waters of how athletic performance is intertwined with genetics.Maria van Noordenne is from British Columbia, Canada. She earned her BS in Psychology (with a Biology focus) and a minor in Statistics, as well as her MS in Cognition and Brain Sciences from University of Victoria in 2017. She spent time her time volunteering at a transition house crisis line and at medical genetics in Victoria General Hospital. She also worked as a crisis counselor at a youth shelter in addition to contracting research projects, including a few months in Nunavut, Canada. She is excited to be completing her first year of genetic counseling at Sarah Lawrence College.Ashlyn Enokian is a first year genetic counseling student from Brighton, Michigan. She earned her BS in Biology and a minor in Criminal Justice from Grand Valley State University in 2017. Her journey into the field of genetic counseling began with advocacy work through Crisis Text Line and Help Pregnancy Crisis Aid. She worked as a genetic counseling assistant in cancer genetics at Saint Joseph Mercy Hospital, pediatric genetics at the University of Michigan, and laboratory genetics at Progenity, Inc. Her professional interests include fertility, neurogenetics, and strategies to increase diversity in the field. She acts as a student representative of Sarah Lawrence College’s Class of 2020 and is a genetics graphic design intern at My Gene Counsel.Kira Dineen hosts DNA Today: A Genetics Podcast (and radio show), which was founded in 2012 and features over 100 episodes interviewing genetic counselors, patient advocates and other genetic experts. The show was nominated in the 2015 and 2016 Podcast Awards. She also hosts other healthcare podcasts including Advancing Dentistry and Insight Says: A Mental Health Podcast. Kira is the Communications Lead at My Gene Counsel, a digital genetic counseling company. She is also a member of National Society of Genetic Counselors’ Digital Ambassador Program (aka #NSGCGenePool). Kira received her in Bachelor's of Science degree in Diagnostic Genetic Sciences with a concentration in Cytogenetics at the University of Connecticut, and has a certification as a cytogenetic technologist. Along with Ashlyn, she is a student representation in Sarah Lawrence College’s Genetic Counseling Class of 2020.Interested in getting in contact with a current student at a specific school? Shoot us an email (info@DNApodcast.com) and we will work our networks to connect you. Don’t hesitate, we love networking with fellow future genetic counselors!Stay tuned for the next new episode of DNA Today on May 3rd, 2019 with patient advocate and motivational speaker Seth Rotberg who shares his experience with Huntington Disease in honor of awareness month. New episodes are released on the first Fridays of the month and sometimes there are bonus episodes, like this one, on other Fridays! See what else I am up to on Twitter, Instagram, Facebook and iTunes. All questions, comments, and inquiries can be sent to info@DNApodcast.com.

Seth Rotberg found out as a 15-year old that his mom had a rare neurological genetic disease known as Huntington's disease. Five years later, he tested positive for the disease. Today I'm talking with Seth about secrets, strengths and recognizing the power of community on Get Social Health. Connect with Seth at the links below: LinkedIn Twitter Website TEDx Natick Interview Transcript Janet:                                00:01                   Seth Rotberg found out as a 15-year old that his mom had a rare neurological genetic disease known as Huntington's disease. Five years later, he tested positive for the disease. Today I'm talking with Seth about secrets, strengths and recognizing the power of community on Get Social Health. Announcer:                      00:21                   Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health, brings you conversations with professionals actively working in the field and provides real-life examples of healthcare, social media in action. Here is your host, Janet Kennedy. Janet:                                00:48                   Welcome to Get Social Health. My name is Janet Kennedy and I'm the host of the podcast in case you didn't know. Today I have a special guest on who is going to share a very personal story of his own health journey, and how he is using that experience and his situation to make the journey for a lot of other people. Seth Rotberg is a rare disease advocate and a motivational speaker and he's got a really amazing story to tell, so I'm happy to have him join me on the podcast today, Seth. Good morning. Seth:                                  01:20                   Good Morning Janet. How's everything going? Janet:                                01:23                   Well, as we spoke before, I'm getting over a little bit of a cold, so I'm going to sound a little funky to my usual listeners today. But it's a beautiful day in North Carolina where we have eight inches of snow. Also a rare situation. Seth:                                  01:38                   Yeah. Well, I can't complain myself. Being up north in DC, you know, it's nice and warm here. I think 30 degrees? Janet:                                01:51                   You are in Washington DC now, but you are a Massachusetts boy. We were talking about both sox and teams up in the Boston area. So tell me a little bit about where you grew up. Seth:                                  02:09                   Well, first off, I do have to say it's exciting to grow up with a lot of gray Boston sports, especially with the Red Sox winning the world series this past year. I grew up about 30 minutes west of Boston in a town called Natick and I'll just jump right into it. Seth:                                  02:27                   My mom had this rare neurological and genetic disease not as Huntington's disease is also known as HD. Similar to having ALS, Alzheimer's, and Parkinson's all into one disease, slowly deteriorating a person's physical and cognitive abilities and unfortunately currently there's no cure. I found out my mom had this when I was 15 years old when she was officially diagnosed. However, prior to that she was like most people misdiagnosed for about seven years, was a long time to for someone to be told that they have depression or bipolar disorder and then find out it's even worse than that, which is a disease without a cure. Growing up it was very difficult, especially as a young person, which is kind of where we'll talk about later. The work I'm doing today focusing on providing resources and support for young people impacted by rare chronic condition, more importantly in the Huntington's disease space. And then we can talk later about my professional career trying to connect patients and caregivers. Don't one another anonymously in the health space. Janet:                                03:37                   Well this is something that is also a hereditary disease? Seth:                                  03:43                   Yes. You mentioned hereditary and when I first learned about it, and I'm going to take everyone back to biology class where you do those Punnett squares. Do you remember that at all, Janet? Like the Punnett squares, we have the match like the upper case and lower case like the dominant and recessive. Janet:                                03:59                   Are we going to talk about peas in a minute? Seth:                                  04:02                   Yeah, we might. I mean my thought was with a disease they say, well if your Dad's dominant recessive. And so when I did it, it was like, , I'm in the clear I'm all set, but that's not how a lot of these rare diseases work, especially Huntington's where I'm at a 50/50 chance of inheriting it. It's a simple flip of a coin and it's tough to really look at that and say, well where's my future going to end up? Am I going to end up just like my mom or am I going to end up props testing negative and having survivor's guilt, and that's when I ultimately decided at the age of 20 to test for Huntington's disease where I found out I tested positive. I'm a gene carrier and one day know that I'm going to end up just like my mom just slowly deteriorating both physically and mentally and not much I can do at the time. Janet:                                05:00                   So is it a given? If you have the gene, that's it. Seth:                                  05:05                   That's it. Yeah. I mean, unfortunately, that's how it is. And what's unique about Huntington's disease is that they can test it, they know where it is, but it's such a unique gene that you would think that they'd be like, here's how we cure it, but of course like any rare disease is a lot tougher than just saying, hey, we're going to pull it out or do something like gene therapy or DNA silencing and hope for the best. But at the end of the day, Janet, it's a 100 percent. Given that within maybe 15 or so years I'm going to start developing symptoms and there it is. Janet:                                05:47                   You were a very young man when you were brave enough to get tested. But I understand you also didn't share that information with very many people. Seth:                                  05:57                   Yeah. That's something I wish I did and I think the challenge was knowing that my mom was still alive and didn't want to put more on her plate. I didn't want her to suffer even more than she was. My Dad being a caregiver, not wanting to worry him, put an additional load onto him. And then having an older sister, I felt like she may feel the pressure to also get tested. So I actually only told a few friends and over time felt a little bit more comfortable telling more and more friends. But telling my family was very tough and it, it was challenging because I value family a lot and I, I was trying to do what's best for them and not having them worry about me, which again, it's, it's a difficult point because it's your family and you want, you want to be open with them, but at the same time you're like, , well how much do I share with them and how comfortable am I going to feel afterwards? Janet:                                07:02                   And that's kind of where I was at at the age of 20. And it actually took about three years. I really thought it took about two years when I had to like trace it back. And I'm like, wow. Actually took about three years until I told my Dad and my sister and then told my family. And I did this TED-X talk earlier this year in January. And it was like what I mentioned, there's coming out of this like genetic diseases closet where I was open about it and I just felt like I didn't have to hide that big secret. Have you ever been ever had that like big secret or like a secret that you're like, you just can't share with anyone or are you just not sure how people are going to react? Janet:                                07:38                   Well and it's also the fear that that gets built out of proportion about how people are gonna react. You spend so much time thinking about how they're going to react that sometimes it's nowhere near as bad as you imagined. Seth:                                  07:51                   No, absolutely. And that was it. I, I figured if I was to tell them, my Dad first off might try to talk me out of it and saying, "Oh why do you want to get tested so early?" And I knew this is something I wanted to do because similar to my Mom, I would maybe drop my phone or forget a conversation or something that my friend just told me and I would think, "is this Huntington's or is this just me being a 19, 20-year-old college student who just happens to do this?" And so it was just mentally draining that I didn't want to live with the unknown. I like to plan ahead. I'm definitely one of those planners. So I wanted to know what my future held. And again, like you said, Janet, it's something that, I didn't know how people react, but I also emphasize the importance of making this decision on your own because it is a very personal decision. Janet:                                08:49                   I can't imagine what it must have been like, not to tell. I'm sort of known as not being able to keep a secret in my family that I feel like people ought to know things. So I cannot imagine keeping a secret for two to three years about something like this. But what I'm really curious about is. So you actually have identified that you have a life-terminating disease, an illness that has no cure. Are you talking to medical professionals? Are you talking to other people who have the condition? Who do you confide in because that sounds like a really big burden for your dorm mate too. Seth:                                  09:25                   It definitely is and for me again, I was very fortunate to have some good friends who were very supportive and if-if I go back in time I definitely would have told my family from the beginning because the importance of having that support system and making sure it had the right resources because I didn't go through genetic counseling, which again, I always emphasize when I do other talks about the importance of it because they make the process more manageable a lot easier. Nothing is going to be easy, but if you can make it somewhat easier, more comfortable, it does go a long way in the long run. Janet:                                10:04                   Can you explain what exactly is genetic counseling? Because hey, you got what you got. So what does that really mean? Seth:                                  10:11                   So also I'm going to open. I hope I do a good job explaining what genetic counseling is, but it's somewhat new compared at least to a lot of the main specialists, but it's done by a genetic counselor, someone who focuses on helping someone who has to figure out whether or not they should go through testing what their options were. Talking about family planning, talking about maybe life insurance or health care. So a lot of things, that we really, especially the young person, don't really say. I don't know. I never thought about, oh, should I get life insurance or long term disability care or family planning options. I originally just thought, well I can either have a kid or adopt. And then I learned later learned about IVF with PGD, which is a pre-implantation genetic diagnosis, which tests the eggs and makes sure that they're free of any genetic conditions. Seth:                                  11:16                   And then I also found out about the whole idea of like sperm donation. So, what's funny Janet, is I was doing this talk to genetic counselors and I mentioned the whole option of sperm donation that I found out from speaking with a genetic counselor and it got me thinking right away. I was like, well which of my friends are going to be willing to donate their sperm or do I go after one of our famous Boston sports, Tom Brady or Gronk or David Ortiz or someone like that and just say, hey guys, I know you don't know me but I need a favor. Janet:                                11:58                   Well, that's unusual and I'm not sure if there is a professional athlete for sperm donation organization, but maybe you should be the one that starts it. Seth:                                  12:09                   Yeah. I'm not sure how they would feel about it, to be honest, but I was just more of like the idea of knowing if there's any alternatives, what are the options? And honestly just counseling you to make sure that you have the right resources and support. So when I say support, I'm not just saying family, but also friends, maybe it's professional support such as a therapist, like high trust. And then with the resources, making sure you have the right educational content to social and emotional resources. Maybe it's some type of program or service you're involved with. Maybe it's connecting to a local nonprofit. These are a lot of things that I wish medical professionals did more of, which is simply saying, like here's your results, but here are some great organizations that you should reach out to for more help or here's, you know, I'm going to follow up with you in six months just to check in. Seth:                                  13:00                   These are like little things that I think go a long way because you know, when I, when I learned about it, I was a little lost. I didn't know what those next steps were at first. But as soon as I met some other people in the Huntington's disease space, I was like, I want to get more involved. I want to do more. And I used my results as motivation to fight back, to not give up hope. And that's kind of led me to my journey of where I've been doing all these talks. Especially this past year I've. I've lost track of how many different talks I've done, but I would say at least a dozen talks this past year. Janet:                                13:35                   How did you connect with people in the HD space? Seth:                                  13:39                   The first time I connected with someone it was because I ran my own throne through basketball charity event called hoops for Huntington's with one of my good friends and we would look into figuring out where the money's going to go and I got connected to a staff member for the Huntington's Disease Society of America and a national nonprofit focusing on HD and then from there I just started connecting with other people, but one of my friends, she told me about this national convention and how there's other young people and they had space and that kind of opened my eyes and say, oh wow. I'm not alone in this fight. I'm not the only young person who has to deal with the everyday challenges, but more importantly, I was always connected to older adults who had different needs than a younger person where an older adult adult may already have his career, his or her career, their family, a house where I have to figure out all of those things, plus how to cope with it in addition to like romantic relationships, personal family and friends, relationships, things like that where it was a lot easier to relate to someone around my age who understood what I was going through. Janet:                                14:55                   And now, you're a part of a more formal organization at the Huntington's disease organization. Seth:                                  15:02                   Yeah. So I now sit on the board for the Huntington's disease youth organization. What the young people call "HD Yo". Our mission is to support young people impacted by Huntington's disease worldwide. So we put on camps all over the world. We've done at camp in Europe. We'd done a camp in North America. We'd done a camp in Australia - New Zealand. But when, when I say youth, I mean more young people, so young adults. It could be up to the age of 35 years old and ultimately we, the organization was started because we saw that there was this missing piece where they're young people weren't getting the attention or the support they needed and we wanted to bridge that gap. We wanted to fill that missing piece, so not only do we provide camp, but we actually provide educational content on our website in 14 different languages. I was like, wow, that's, that's amazing where we can not just do it in English and Spanish and Italian, but now you know, potentially I think Chinese, a Dutch and German. Seth:                                  16:09                   I think in Russian it's just like all these different languages and then on top of that we also have a director of youth services actually in the DC area, but she's our Director of Youth Services in the US where she helps young people make sure they get the right support and resources and connect them to the right doctors and specialists and I think that's just amazing work that I never had growing up. I didn't have HD YO. I didn't have any of these educational content that I wish I had and said, I just googled, you know, what is Huntington's disease? And I think that's what everyone does when they learn about a new condition is they google it and then they see all these big words and they get intimidated and then they either try to learn more or they say, "wow, this is too much." Seth:                                  16:52                   I can't do this. And that's kind of where I was at his as. Especially as a 15 year old,15-year-old, , this is too much. I don't want to deal with this. I want to just enjoy my childhood. Which I essentially lost out on the whole idea of being normal, which is a whole. Just is not even a thing these days is the whole idea of being normal and it was definitely challenging. And, and so what my goal is, especially being a board member for HD YO, is honestly being that, having the opportunity to share my story, to inspire others, but also to connect people, young people to the right resources. So connecting them to the services we provide are making sure I can make sure I can connect them with another young person in their area or just making sure they know that they're not alone in their fight against HD. Janet:                                17:46                   I am wondering a little bit about the actual manifestation of the disease. So you obviously knew very clearly that you had the potential for having it because of your mother, but is that how most of these other young people are finding out that they are also carrying the gene for HD through family members or his symptoms? Wouldn't symptoms appear in as young as the teens or twenties? Seth:                                  18:15                   It really depends, Janet. I think their's is even a more rare form of Huntington's disease, which is the juvenile version. So how it works is everyone has actually everyone has like a Huntington gene, but there's the, what we call it, the CAG repeats your, your CAG repeats and when there's a mutation, that's when the Huntington gene can expand and then that's when you actually have the disease itself. So usually the normal gene per se is anything under, I want to say 26. It always, I feel like it varies every time I talk to someone knew about it, but usually about, I think I would say under 26, 27 is normal. And then there's this gray area. The gray area is a little confusing because it's like, I think it's, I want to say like 28 to 35, but like a section of that means that you have a 25 percent chance of showing symptoms later in life were another part is like, oh, you might still have a chance of showing symptoms, but more importantly this gray area is saying, you tested negative. Seth:                                  19:26                   There's a small chance that you might show symptoms like in your sixties or seventies, but like very little. But the thing is if you're in this gray area, your kids can still be at risk and I think that's a thing that's not addressed enough. Going through testing, it's either , you're positive or negative. So anything over, I would say 36 and above. I believe it's 36 or above means that you have you carry the gene. The higher it is, the more progressive it is. So this juvenile version is 60 or above, so I unfortunately I've had friends who are in the juvenile stage and they're repeats are in the sixties, seventies and the eighties. And it's tough. It's sad to see, you know. I lost a friend of mine, her name was Megan, at the age of 26 to the juvenile version of this. But what Megan really taught me, not to, not necessarily to grieve, but more to say, here's how you gotta live your life. Seth:                                  20:23                   You got to live in the moment and live with a positive outlook because that's what makes any situation a better one. And that really stuck with me after she passed away to make me honestly. She was one of the reasons why I wanted to share my story. It was because she was, even though she was struggling and dealing with the symptoms of HD, she's still shared her story. She still always had a smile on her face and that's what got me going. But essentially when people learn about it, learn about it because their parent has it most of the time. But the other challenging thing is how do you talk to it? How do you talk to a child about it? With my parents, for example, they just said, hey, your mom has Huntington's disease. It's a rare disease from what I recall again, but that was it. Janet:                                21:13                   And so that's something else that I think HBO is trying to work on. We have some staff as well as volunteers who have done a tremendous job on explaining, are working with people of how to talk to kids about HD. We actually have a fellow board member of mine, her name is Dr Bonnie had again, and I hope I pronounced your last name right, but she is. She wrote a book about how to talk to kids about HD, which I think is amazing. I think it can relate to other conditions of how do you talk to your kids about any rare disease, any genetic condition. Janet:                                21:45                   And that's so important. I think knowing how to communicate to children and children at various ages. You know how you would talk to a elementary age child is different from a middle or high school age child. You know, how much can they absorb, how much should they absorb, what, what is going to empower them to not live in fear and to have the knowledge they need is a very tricky thing and it takes a very good communicator to understand how to deliver that information at various ages. Seth:                                  22:18                   I couldn't agree more. I think it definitely, you have to communicate it. You have to be transparent. You have to be honest and that's the challenge is you don't know how someone's going to react similar to my situation wants to tell him. My Dad, my sister, they were fine with it. They were like, oh, you know, thanks for telling me. But they're just like how did you hide this? It wasn't like, Hey, I'm mad at you. It's like, oh, thanks for sharing. And they didn't treat me any differently. That's the biggest thing is there's a stigma behind genetic conditions in my opinion, where people don't know how others will react when you tell them and that's I think the difficult part is even having. I don't have children, but being a child of a parent I can relate to saying , like yeah, it was probably tough for them to tell me I'm glad they did tell me I wish they told me more, but now I can help other maybe parents work with figuring out ways to tell their children are making sure that these children wants to knowing about it, are these young people who know about it, that that they're provided those educational content and going to the right places for learning more about the condition. Janet:                                23:30                   Well, I understand that you've taken your condition, your passion and your desire to really impact others into your career. Seth:                                  23:41                   I have and it's pretty crazy because. Give you a little bit background. My background is in nonprofit work. I was doing a lot of work previously in youth development, working with under resourced students in Boston and then going to Grad graduate school in Chicago the last few years to get a Master's in nonprofit management and I really thought I would either be staying in Chicago, are moving back to Boston, working for a nonprofit. We're focusing on, especially high school students. I felt like that was kind of my calling of connecting with them, working with them, building that relationship up with them, but then again what happened this past year has been an amazing just experience. As mentioned before. I did this TED-X talk, sharing my story in front of 800 people in my hometown back in January and just kind of took off from there. Seth:                                  24:34                   I was able to connect with so many other people in the rare disease space. Understanding the needs of young people and then trying to learn about just different organizations and what they do to help support those impacted by rare chronic condition. And that's when actually I came across this company called Inspire who I heard briefly about in the past because they were doing some, this initiative called experts by experience where they would bring in people to share their, obviously their experience of living with a rare chronic condition and you know, next thing you know, I'm working for them. And to give you a background on what inspired does is where a social health online network connecting patients and caregivers to one another anonymously. And what's, what's cool is we actually have staff here who moderate our online communities, 24/seven. So you know, they're taking shifts, night shifts, morning shifts just to make sure to moderate for kind of being that, that online police in a way. Seth:                                  25:41                   So making sure people aren't potentially giving out personal medical advice. Any type of spam, any of those arguments that go back and forth. We think it's important for people to feel like they can connect with one another and know that they're not alone alone in their fight and we actually have over 100 different nonprofit partners and that's kind of where my role comes in as a partnership's manager is trying to build not only our current partnerships but new partnerships with these nonprofits so that we can build these online communities for their patients and caregivers to connect with one another. Again, that whole idea of being anonymous is something that I've learned more and more about, especially in this role of, you know, you can go to an Instagram, you can go to Facebook, go to Twitter, and I think it's great that there's different social media options, but I think what makes our site unique is that idea of being anonymous. Seth:                                  26:35                   Idea of having it moderated by professor, by our staff and we're kind of the experts on the online moderation. But that's why we bring into nonprofits because they're the ones with the resources. Making sure that they know where to go when they're looking for educational resources and content or even services that the nonprofit partner may provide. The biggest thing that I always stress is one, I'm not just trying to sell a nonprofit partner on on this, but more importantly, as you know, I've lived the experience. I grew up in a family impacted by the rare disease. I know what it's like. And so making sure that they're being able to have that opportunity to connect with others who know what they're going through. That's the, that's the biggest thing because I didn't, I didn't have anyone growing up until actually to be honest, until about the age of 19 when I was in college and when I was actually a sophomore in college, just turning 20. Seth:                                  27:34                   Someone who lived down the hall from me in my dorm, said, oh, my friends come and visit. And her mom also had HD. And as soon as I met her, I felt like I knew her for years because I didn't have to explain myself over and over and over again. She just knew. She knew what was going on. And it was just great to know that I didn't have to live in isolation. I had someone else I could talk to about this and of course that grew over time, but that's Kinda why I always say, hey listen, I'm not here to tell you just to do it to do it, but here's an opportunity for those who may want to connect anonymously, like a username, think of like AOL or AIM where you have that user name and then if you want to connect more you can message them or add them as a friend or, or just, you know, you can share more if you want, but it also gives them the opportunity to share as much or as little as you want. Janet:                                28:25                   I took a quick look at Inspire and I lift up Huntington's disease and I know that there's almost a one and a half million members of Inspire, of which 389 are part of the Huntington's disease community. So when you talk about it being rare, that's amazingly rare. What a great resource to put together people who need to find other folks like themselves. Seth:                                  28:52                   As you can see with the Huntington's disease community, it's a lot smaller than some of our other ones. And that's because of course Alan doesn't have a nonprofit partner yet. That's something in the works, but I think, you know, when you have that partner you can, they can also help drive people to it and make sure people know about this resource with Huntington's disease. There's 30,000 people in the US who have another 200,000 plus who are at risk. And so yes, I think Inspired is a great platform for Huntington's disease space with other as well as other conditions. But I think when you have a nonprofit partner is going to help drive more people and that. And that's something that I'm really excited to do, especially personally being impacted is, is trying to get potentially other people like myself involved in the conversations within that community on Inspire. Janet:                                29:57                   You know, one of the things that is happening in my household is that my son has and his father's side of the family have all gotten 23 and Me genetic testing kits now on my side of the family, on the Kennedy side of the family. My Dad's an avid ancestry researcher, so I can tell you that I've got family members that we've discovered all the way back to something or other and that's cool. And so we feel like we pretty much know and understand what's going on on one side of the family. On the other hand, on my son's side of the family, past great-grandfather. They know nothing. They don't know anything who were, when they came over. How many folks are they related to anybody in the world. And so I'm really fascinated with this whole experience and the things you can find out from that. So I'm curious since there's so many sales going on with all these genetic testing platforms related to the holidays, are you all gearing up in January for a lot of folks going? Why I have one getting ready for kind of a rush of people who are now going to start to wonder about some of the things going on in their holiday gift, genetic testing. Seth:                                  31:09                   I think that that's a great question, Janet, and with the whole 23 and Me and learning about your history of your family, it obviously has its pros and cons, but the challenge with 23 and Me and a lot of these other genetic testing kits is again, if you don't have that one to one service, have a genetic counselor. You're not talking to a specialist. You don't know what those next steps are. That's the biggest thing is when someone learns about a diagnosis or learning about them being at risk for something, you always wanted to look at, well, what's my next step in my journey? And if you can connect with other people who have either already gone through that journey or are going through the same path that you are timeless simultaneously. I think it definitely helps make things, again more manageable, but more importantly I stress on the idea of a jag counselor because again, they're going to help provide that support and making sure that you know what your options are, whether you have a jag condition or not. I think the other challenge, again with Huntington's disease, it's so unique that when you're at risk, I definitely think that it's important to go through genetic counseling because you could test negative, but you might have that survivor's guilt or you might test positive and not know what those what to do next and I really just don't know. It's a tough one to answer, but my thought is if you do decide to go through 23 and Me or ancestry.com or any of those other ones, just make sure that, once you do it, there's no looking back. You can't just hit the rewind button and say, I don't want to do this. I don't want to learn about additional potential conditions I may have or that was passed down from my family. So making sure that you know what, what to expect and know what your options are, not only after doing a book prior to doing it and kind of talking to others about your family, about it, maybe friends about it, professional about it, just so that you know what to expect when finding out the results. Janet:                                33:33                   I think that is such good advice and one of the things I do want to let people know is that in the show notes we'll have a LinkedIn profile and also a link to the talk that he did at TED-X Natick. I thought that was just a really, really interesting presentation and something that people I think really need to listen to because I liked the idea that you've said about coming out of the chronic disease closet. That idea that you don't have to keep this all to yourself. There are other people who can support and help you and don't suffer in silence. Seth:                                  34:01                   I couldn't agree more and Janet, the biggest thing is it takes time, but understanding that you aren't defined by the disease and being defined by who you are as a person. And I actually had one of my good friends, his name's Peter, he and I had this conversation because to be honest with, with dating, you know, when you tell them about your condition, do you say on the first date, you know, the six days, six months in, you don't know how they're going to react, but what he told me, he said, listen, you can't talk about it. It shouldn't. It shouldn't be part of your life every day. And, and it really kind of changed my perception of say he's right. Like even though I am doing these public speaking talks and I'm doing a lot of work in the HIV space, at the end of the day I don't need to tell them about it because, and I say that in a nice way. I'm saying I don't need to tell them that that's all I do and that I should be defined by Huntington's disease rather than who I am as a person. And it's really changed my perception on, looking at, at life differently, but it also just helped me understand that it's not about being perceived as, hey, I'm Seth with Huntington's was, hey, I'm Sam, I'm impacted by it, but here I am as this is who I am as a person. Janet:                                35:20                   That you are not defined by your disease. Seth:                                  35:23                   Exactly. Not defined by the disease and still trying to do great work. I mean, as as mentioned before, not only doing a TED-X talk, I spoke at global genes talking about the emotional toll toll a condition as a rare disease patient. I actually have spoken in front of genetic counselors, genetic counseling students and Undergrad and graduate. And also more recently I've, I've spoken in front of researchers. And I think that's the biggest thing is how do we bridge the gap? Getting the patient's voice more involved in research, listening to what our needs are and how we can take those next steps to speed up medical progress. Janet:                                36:04                   Well you are certainly on the right path and I congratulate you for the work you're doing and also for the passion that you're sharing with people because it is through stories that people will really connect with each other. Seth:                                  36:18                   Yeah, and I appreciate you having me on here chatting. It's just more of an opportunity not for me but just for others to know that they're not alone when dealing with their health condition and knowing that there's people like you and I out there who want to help others and make sure that they hear stories like my own or stories of others on the podcast and just hearing that, you know, even though there are challenges in our lives we're still trying to make the most out of each day and that we can always do more to help others out. We can always do more to make a difference in the health space. Janet:                                36:51                   Well, you keep at it, Seth, and I look forward to hearing some more about what you're up to in the coming years. You've been listening to the Get Social Health podcast. My name is Janet Kennedy. My guest today was Seth Rotberg and you can find all of his contact information in the show notes. Thank you so much for listening Announcer:                      37:11                   And now here's a social media success tip. Mike Sevilla:                     37:14                   Hey, this is Dr Mike Sevilla, family physician and physician social media pioneer and here is my social media tip. Now I got a question a lot. He said, "Mike, you know what kind of gear do you need to be a a social media superstar?" And I tell people it's not about the gear. There's three basic success tips I can share with you. One, you need a very cool social media mentor that you can ask questions to to. You need to have a message. What is your message? What do you want to convey out there in three, what are the goals? What do you want to achieve by being on social media? You follow those three tips, Success you will find. Announcer:                      37:58                   You've been listening to the Get Social Health podcast. The show notes are located at getsocialhealth.com. To join our healthcare social media journey, follow @GetSocialHealth on Twitter, and start a conversation. Janet:                                38:13                   Thanks for downloading this episode of the Get Social Health podcast. If you enjoyed our conversation, a review and a rating on iTunes will help us find more listeners. The Get Social Health podcast is a program of the Healthcare Marketing Network, bringing you the best in healthcare communications. Our network includes dozens of writers with a wide variety of expertise and a broad range of medical specialties. If you need blog, website, white paper, or patient facing content, let the healthcare marketing network be your external content engine. For more information, contact me, Janet Kennedy. My email is janet@healthcaremarketingnetwork.com.  

In episode 2, we sit down with a handful of attendees at the 2018 Professional Patient Advocates in Life Sciences (PPALS) certificate training course held earlier in the summer. In part 2 of this episode, you'll hear interviews with Seth Rotberg from the Huntington Disease Youth Organization, Olivia Montano from the PROS Foundation, and Rob Long & Brett Brackett from Uplifting Athletes.

Seth found out as a 15-year-old that his mom had a rare, neurological, genetic disease known as Huntington’s Disease (HD). HD is like having symptoms of ALS, Alzheimer’s, and Parkinson’s all at once, and there currently is no cure. Five years later, Seth tested positive for HD and used the results as motivation to give back to the community through fundraising, advocacy, and volunteer efforts. His hope is to be a mentor for young people who face adversity by sharing how taking control of his HD journey has given him opportunity, fulfillment, and hope. 

Seth Rotberg is an active member of the Huntington's Disease community and is passionate about bringing his personal experience to working for non-profit organizations. He has more than seven years of experience working and volunteering with various youth development nonprofits. Seth currently sits on the board for the Huntington's Disease Youth Organization (HDYO). Watch Seth's TEDx Talk HERE  Connect with Seth HERE.  BeTheTalk is a 7 day a week podcast where Nathan Eckel chats with talkers from TEDx & branded events. Tips tools and techniques that can help you give the talk to change the world at BeTheTalk.com !

Seth Rotberg is an active member of the Huntington’s Disease community and is passionate about bringing his personal experience to working for non-profit organizations. He has more than seven years of experience working and volunteering with various youth development nonprofits. Seth currently sits on the board for the Huntington's Disease Youth Organization (HDYO). Watch Seth's TEDx Talk HERE  Connect with Seth HERE.  BeTheTalk is a 7 day a week podcast where Nathan Eckel chats with talkers from TEDx & branded events. Tips tools and techniques that can help you give the talk to change the world at BeTheTalk.com !

Seth Rotberg grew up in the shadow of Huntington’s disease, a rare, genetic, neurodegenerative condition. Children of people with Huntington’s have a 50 percent chance of developing it themselves. When Rotberg was in college, he made the decision to get tested to see if he too would develop the disease. We spoke to Rotberg about his decision to get tested, why he largely kept the results to himself for two years, and what led him to become a patient advocate.