Toronto author and public speaker, Erin Paterson, tested gene positive for Huntington’s Disease (HD) in 2007. Shortly after she started suffering from depression, then received more crushing news, she was infertile. Despite those diagnoses she was determined to have a family and live a joyful life. She is a proud mom who loves to run and bike in her spare time.
She is on a mission to positively impact other people’s lives by writing and speaking about genetic disease, depression, and infertility. She shows it is possible to live a meaningful life even when faced with unexpected obstacles. She is the author of, All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness (view on Amazon.com)
Erin Paterson is also the founder of Lemonade Press, a local publisher focused on empowering patient communities by helping people write and share their own journeys in specialized medical anthologies. To learn more about Erin, visit her website www.erinpaterson.com.
20 Jul 2021
Episode 25 - Seth Rotberg
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.
28 May 2021
Episode 24 - Amy Chesire & Greg Suter
Amy Chesire (University of Rochester) and Greg Suter (Hereditary Neurological Disease Centre) are long-time site coordinators for clinical trials in Huntington's disease. On this episode of the HD Insights Podcast, we spoke with both about their history of working with clinical study participants and their current experience with participants on the KINECT-HD study.
KINECT-HD is a Phase 3, randomized, double-blind, placebo-controlled study investigating valbenazine for treatment of chorea in Huntington disease. The study is being conducted at sites across the U.S. and Canada. Additional information about the study can be found at www.KINECT-HD.org.
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