Podcast appearances and mentions of sharon terry

This week on The Genetics Podcast, Patrick is joined by Sharon Terry, President & CEO of Genetic Alliance. They discuss how Sharon established a layperson-led biobank, her long-term work on rare diseases and patient advocacy, and her program to bring genetic technology to patients in low- to middle-income countries.Show Notes: 0:00 Intro to The Genetics Podcast00:59 Welcome to Sharon and a discussion of the personal experience with rare disease that started her journey03:47 Reasons why Sharon decided to establish the first layperson-led biobank05:34 Challenges with setting up the biobank infrastructure07:00 Balancing financial factors in a non-profit organization 09:30 Recent patterns and future insight into rare disease drug discovery framework and regulation15:32 Barriers to widespread collaboration and cooperation in rare disease research, and why it should be approached from a public health perspective18:12 Background and experiences from the iHope Genetic Health program in low- to middle-income countries24:44 Sharon's perspective on current challenges with the Genetic Information Non-discrimination Act28:49 Sharon's lessons learned in her patient advocacy and policy work, and her hopes for future legislation 33:04 Sharon's hopes for improved access to genetic testing and treatment for children in underserved communities34:34 How Sharon learned about rare diseases and genetics as a “homeschooling mom without a degree”37:54 Insights into how elements of spirituality can support advocacy work40:18 Closing remarksFind out moreGenetic Alliance (https://geneticalliance.org/)Please consider rating and reviewing us on your chosen podcast listening platform! https://drive.google.com/file/d/1Bp2_wVNSzntTs_zuoizU8bX1dvao4jfj/view?usp=share_link

This interview first aired on Wednesday the 29th of May, 2024 on ONE FM 98.5 Shepparton. One FM fill-in breakfast announcer Plemo interviews Sharon Terry from the Shepparton animal shelter about their upcoming cat adoption day. Greater Shepparton City Council is encouraging community members to find a perfect companion for the winter and give one of the many cats and kittens currently at the Shepparton Animal Shelter a forever loving home. Cat Adoption Day: Saturday 1 June, 10am-2pm, 125 Wanganui Road, Shepparton Adoption fees reduced: $30 for cats over 12 months, $100 for kittens. Over 40 cats and kittens seeking homes Adoption fees for cats over 12 months of age have been reduced to only $30, whilst the adoption fee for kittens is $100. No appointments are necessary, just turn up during the specified times for a meet and greet. Adopting not only changes the life of the cat you adopt, it also frees up space in the Shelter so they can take in new animals in need. Animal Shelter staff encourage people planning to attend the day to check out the available cats online on Council's website and choose their favourite feline friend. There is also an online pet adoption questionnaire which can be completed before you get to the Shelter to save time on arrival. All cats have been vet checked, desexed, microchipped, vaccinated, treated for worms and fleas and are ready to take home on the day. Don't forget to bring a carrier to take your new furry friend home, or you can purchase one from the Shelter on the day. Visit the adoption page on Council's website to discover the cats and kittens available. Contact the station on admin@fm985.com.au or (+613) 58313131. Listen to One FM Breakfast weekdays on 98.5 One FM 6am-9am. The ONE FM 98.5 Community Radio podcast page operates under the license of Goulburn Valley Community Radio Inc. (ONE FM) Number 1385226/1. PRA AMCOS (Australasian Performing Right Association Limited and Australasian Mechanical Copyright Owners Society) that covers Simulcasting and Online content including podcasts with musical content, that we pay every year. This licence number is 1385226/1

This interview first aired on Thursday the 28th of March, 2024 on ONE FM 98.5 Shepparton. One FM fill-in breakfast announcer Plemo interviews Greater Shepparton City Council's Manager of Environment Sharon Terry about pet registration. To find out more information head to https://greatershepparton.com.au/animals-environment-and-waste/animals/pets/animal-registration or call Council Local Laws and Animal Management Department on (03) 5832 9700 Listen to One FM Breakfast live on weekday mornings from 6am-9am. Contact the station on admin@fm985.com.au or (+613) 58313131 The ONE FM 98.5 Community Radio podcast page operates under the license of Goulburn Valley Community Radio Inc. (ONE FM) Number 1385226/1. PRA AMCOS (Australasian Performing Right Association Limited and Australasian Mechanical Copyright Owners Society) that covers Simulcasting and Online content including podcasts with musical content, that we pay every year. This licence number is 1385226/1.

This podcast is a commentary and does not contain any copyrighted material of the reference source. We strongly recommend accessing/buying the reference source at the same time. ■Reference Source https://www.ted.com/talks/sharon_terry_science_didn_t_understand_my_kids_rare_disease_until_i_decided_to_study_it ■Post on this topic (You can get FREE learning materials!) https://englist.me/150-academic-words-reference-from-sharon-terry-science-didnt-understand-my-kids-rare-disease-until-i-decided-to-study-it-ted-talk/ ■Youtube Video https://youtu.be/7IrctLEnSRY (All Words) https://youtu.be/2cDpEk8UBII (Advanced Words) https://youtu.be/WGqKnQpfcsI (Quick Look) ■Top Page for Further Materials https://englist.me/ ■SNS (Please follow!)

Please join our guest host, Dawn Lobban, Head of Envision the Patient team at Envision Pharma Group, and guest Sharon Terry, President and CEO of Genetic Alliance, a not-for-profit organization that works to provide programs, products and tools for ordinary people to take charge of their health, as they continue a discussion started at the 2023 ISMPP Annual Meeting. Sharon's keynote address on the first day of programming set the tone for the meeting theme of Patients First. Sharon describes her background and how she became involved in rare diseases, patient advocacy, and patient authorship. Learn about the importance, barriers, and solutions to involving more patients in medical communication and publishing.

This interview first aired on Friday the 6th of April, 2023 on ONE FM 98.5 Shepparton. One FM breakfast announcer Terri Cowley interviews Greater Shepparton City Council's Manager of Environment Sharon Terry who talks about pet registrations and how people can go about adopting a cat. To find out more or to download a pet registration form head to https://greatershepparton.com.au/animals-environment-and-waste/animals/pets/animal-registration Contact the station on admin@fm985.com.au or (+613) 58313131. Listen to Terri Cowley weekdays on 98.5 One FM 6am-9am. The ONE FM 98.5 Community Radio podcast page operates under the license of Goulburn Valley Community Radio Inc. (ONE FM) Number 1385226/1. PRA AMCOS (Australasian Performing Right Association Limited and Australasian Mechanical Copyright Owners Society) that covers Simulcasting and Online content including podcasts with musical content, that we pay every year. This licence number is 1385226/1

In a field full of amazing people, no one --- no one -- is more remarkable than Sharon Terry. And this is despite (or perhaps because of) the fact that she is not, technically, in the field at all: Sharon Terry is, as her bio describes her, “just a mom with a master's degree in theology.” Sharon's personal story of a journey from the worst form of heartbreak and disempowerment – the discovery that both of her young children had a rare genetic disease with a bad prognosis – to become a role model for parent activists everywhere.

This interview first aired on Friday the 9th of December, 2022 on ONE FM 98.5 Shepparton. One FM breakfast announcer Terri Cowley interviews Greater Shepparton City Council's Manager of Environment Sharon Terry who talks about how the council is tackling the current mosquito outbreak. If you require a Japanese Encephalitis vaccination consult your GP or the GV Health website Contact the station on admin@fm985.com.au or (+613) 58313131. Listen to Terri Cowley weekdays on 98.5 One FM 6am-9am. The ONE FM 98.5 Community Radio podcast page operates under the license of Goulburn Valley Community Radio Inc. (ONE FM) Number 1385226/1. PRA AMCOS (Australasian Performing Right Association Limited and Australasian Mechanical Copyright Owners Society) that covers Simulcasting and Online content including podcasts with musical content, that we pay every year. This licence number is 1385226/1

This broadcast first aired on Sunday the 31st of July, 2022. One FM Presenter Jason Welsh interviews Greater Shepparton City Council's Manager Environment Sharon Terry at a special outside broadcast live from Mooroopna for National Tree Day. Contact the station on admin@fm985.com.au or (+613) 58313131 The ONE FM 98.5 Community Radio podcast page operates under the license of Goulburn Valley Community Radio Inc. (ONE FM) Number 1385226/1. PRA AMCOS (Australasian Performing Right Association Limited and Australasian Mechanical Copyright Owners Society) that covers Simulcasting and Online content including podcasts with musical content, that we pay every year. This licence number is 1385226/1.

Tatura Transition Towns' annual Film Festival on August 27 in the town's Victory Hall had a fascinating vibe about it as about 40 people listened to an array of speakers talk about their role in helping people enjoy a more sustainable life. The City of Greater Shepparton's environment manager, Sharon Terry, explained the council's Climate Emergency Action Plan; Tatura man, Royden James, talked about the new home he and his wife had built in the town - a gas-free, totally electric home equipped with solar panels, a Tesla battery, insulation throughout (including the garage), double glazed window and importantly, orientated to take advantage of the northern sun; Henning Rasmussen discussed sustainable buildings and transport and urged listeners to visit the website "Your Home" to learn more about the topic; Peter Foott told the audience about Foott Waste Solutions; and 16-year-old Euroa youth climate activist, Rachael Buerckner (pictured), explained the process leading up to the creation and publication of a book aimed at children, a book that told the story of climate change. Louise Costa Pelle and her partner, Les, explained the process of building a "Passivhaus" on their Rushworth property - a house they are not yet living in, but which is already clearly far more comfortable than their nearby present home. Sadly, I failed to record what Louise and Les had to say, but Climate Conversations will make their home, the process of building it and the joy of living in it, the subject of a future episode. Enjoy "Music for a Warming World". --- Send in a voice message: https://anchor.fm/robert-mclean/message

This interview first aired on Friday the 11th of March, 2022 on ONE FM 98.5 Shepparton. One FM breakfast announcer Terri Cowley interviews Greater Shepparton City Council's Manager of Environment and Sustainability Sharon Terry. She talks about the implementation of the council's Climate emergency action plan. This took place live at Victoria Park Lake in Shepparton on Friday the 11th of March, 2022 To learn more head to https://greatershepparton.com.au/animals-environment-and-waste/environment/climate-emergency Contact the station on admin@fm985.com.au or (+613) 58313131. Listen to Terri Cowley weekdays on 98.5 One FM 6am-9am. The ONE FM 98.5 Community Radio podcast page operates under the license of Goulburn Valley Community Radio Inc. (ONE FM) Number 1385226/1. PRA AMCOS (Australasian Performing Right Association Limited and Australasian Mechanical Copyright Owners Society) that covers Simulcasting and Online content including podcasts with musical content, that we pay every year. This licence number is 1385226/1

Greater Shepparton's Environment Manager, Sharon Terry (pictured), has implored people to get involved with a council plan to ensure the city has a climate-safe future. Residents can do that by completing the questionnaire/survey at "Our Climate Safe Future", which is a part of the City of Greater Shepparton website. The move to create a climate-safe future for all Greater Shepparton residents is a collaborative effort with the city being aligned with "Climate Emergency Australia". Enjoy "Music for a Warming World". Support the show: https://www.patreon.com/climateconversations

One FM Breakfast Announcer Terri Cowley presents a special outside broadcast live from the Goulburn River is Shepparton in celebration of World Rivers Day 2021. Here she is joined by Greater Shepparton City Council's Manager for the Environment Sharon Terry. She talks about the council's role in maintaining our environment and local rivers. This broadcast aired on Sunday the 26th of September, 2021. You can contact the station on admin@fm985.com.au or (+613) 58313131 The ONE FM 98.5 Community Radio podcast page operates under the license of Goulburn Valley Community Radio Inc. (ONE FM) Number 1385226/1. PRA AMCOS (Australasian Performing Right Association Limited and Australasian Mechanical Copyright Owners Society) that covers Simulcasting and Online content including podcasts with musical content, that we pay every year. This licence number is 1385226/1.

Why is the sharing of data so crucial to #raredisease research? Tune in for today's full episode of Few & Far Between. Episode 10 features Sharon Terry, CEO at Genetic Alliance and #pseudoxanthomaelasticum (PXE) advocate.

Conversation with Sharon Terry, Chief Executive Officer, Genetic Alliance, about the influence of genetic factors and genetic disorders on health promotion, disease prevention, and human longevity, and how the Genetic Alliance engages individuals, families, and communities to transform health.

Champagne a.k.a Sharon Terry was born and raised in Rochester, NY. She is a published author,screenwriter, up and coming actress, motivational speaker, entrepreneur and professional model. She recently played Vanessa in a comedy by Unc Trent, “I’ll Drink To That”, “Living the Dream”(movie) and web series “In Between Jobs". She is also the author of latest urban fiction release “The Goddess of Lust, Love and Infatuation Part1”, “Blissful Lust Part2” and Anthology “Dark Memories. She interviewed with “Dj Gatsby Show, The Beautiful Butterfly Radio Show, Vibration Radio Show, Good Deeds Radio Show, On the Rise Radio, Highly Unique Radio, Face the Reality Radio Show, The Authors Show, African Online Broadcasting, Big Body Broadcasting, The Situation Room, WXIR 100.9,HOT914,TPN Live, and media personalities Seleah Simone and Nikki Rich.” She was nominated 2x as “Author of The Year” in the Rocawards”, “Top Female Author of 2019” and “Author Academy Awards.” She is a published print and runway model with Hass Entertainment.” She also was a model in fashion shows “The night of Elegance, and “The Summit” in New York Fashion Week. She is a Published Model in Strawberry-Lit , DSE, Authentically You, High Alliance, C.I.E. Fashion, Humble Vixen, I Wanna Be A Model Too, Pain 2 Purpose, V Count and S.U.E. magazines. She has been featured at various events in Rochester, Ny as a motivational speaker. “She also has her own health and wellness company B.O.S.S.

There are approximately 10,000 known diseases affecting modern humans—about 7,000 of which are rare, and about 3,000 more which are common. Each and every one of us is susceptible to developing or contracting a disease at any point in our lives, and most of us will. And once we do, then what? Where will the resources be? The team at Genetic Alliance is working to make those resources comprehensive and easily accessible by the community in the form of biobanks containing tissue and blood samples, information on the progression of diseases, data on treatment methods and drug therapies, and statistics correlating phenotypic and genotypic traits. They are a 32-year-old non-profit initially established to help other non-profit disease advocacy groups work efficiently and effectively, but over the years they have worked increasingly toward creating and raising awareness of the benefits of disease registries and biobanks. Not only do they allow individuals to decide the way in which their data will be used, but they are making it easier than ever before to share that data by providing non-profit advocacy groups with free sample collection kits. Sharon Terry, CEO of Genetic Alliance, joins the podcast to discuss all of this and more, including large-scale genome sequencing, the stratification of drug therapies, FDA interest in various gene therapy/editing registries, and at least one aspect of Genetic Alliance's mission that doesn't sit well with some academic institutions. Search for information on any of the 10,000 diseases by visiting diseasinfosearch.org, and learn more about Genetic Alliance by visiting geneticalliance.org.

Harry talks with Sharon Terry, president and CEO of Genetic Alliance, about the way drug discovery, diagnostics , and the treatment of patience are changing. How to rate MoneyBall Medicine on iTunes with an iPhone, iPad, or iPod touch: Launch the "Podcasts" app on your device. If you can't find this app, swipe all the way to the left on your home screen until you're on the Search page. Tap the search field at th top and type in "Podcasts." Apple's Podcasts app should show up in the search results. Tap the Podcasts app icon, and after it opens, tap the Search field at the top, or the little magnifying glass icon in the lower right corner. Type MoneyBall Medicine into the search field and press the Search button. In the search results, click on the MoneyBall Medicine logo. On the next page, scroll down until you see the Ratings & Reviews section. Below that you'll see five purple stars. Tap the stars to rate the show. Scroll down a little farther. You'll see a purple link saying "Write a Review." On the next screen, you'll see the stars again. You can tap them to leave a rating, if you haven't already. In the Title field, type a summary for your review. In the Review field, type your review. When you're finished, click Send. That's it, you're done. Thanks!

We often think that scientific research is reserved for PhDs and other experts. But now that's changing. This hour, TED speakers on how ordinary citizens are helping make groundbreaking discoveries. Guests include tech entrepreneur Joi Ito, biomedical researcher Sharon Terry, astronomer Tabetha Boyajian, and journalist Mary Ellen Hannibal.

Dr. Renee Sunday is Christian-pruner who is a Celebrity Media Personality, Best Selling Author, Publisher. Dr. Sunday is internationally known as The Platform Builder. She helps faith-based entrepreneurs get their message out into the world through the media. If you are a faith-based entrepreneur, Go to www.reneesunday.com for your Free Gift. Our esteemed guest: Sharon Terry a.k.a Champagne Sharon Terry a.k.a Champagne was born and raised in Rochester,  Ny. She is author, up and coming actress, entrepreneur and model. She recently played Vanessa in a comedy by Unc Trent, " I'll Drink To That." She is also the author of latest urban fiction release " The Goddess of Lust, Loveand Infatuation. She was also a model for Vision Hair Salon in " The night of Elegance."She also has her own health and wellness company B.O.S.S. You can contact her via email- Champagnebooks1@gmail.com, Fb- Champagne Bcmc, or Instagram- Champagne Bcmc.   

Meet Sharon Terry, a former college chaplain and stay-at-home mom who took the medical research world by storm when her two young children were diagnosed with a rare disease known as pseudoxanthoma elasticum (PXE). In this knockout talk, Terry explains how she and her husband became citizen scientists, working midnight shifts at the lab to find the gene behind PXE and establishing mandates that require researchers to share biological samples and work together. Hosted on Acast. See acast.com/privacy for more information.

Conoce a Sharon Terry, una ex-capellana de la universidad y madre ama de casa, que se adentró en el mundo de la investigación médica cuando sus dos hijos pequeños fueron diagnosticados con una enfermedad rara conocida como el pseudoxantoma elástico o PXE. En esta charla, Terry explica cómo ella y su esposo se convirtieron en científicos ciudadanos, trabajando en turnos de medianoche en el laboratorio para encontrar el gen responsable del PXE y poner las bases de estatutos que requieren a los investigadores que compartan las muestras biológicas y trabajen juntos.

Conheça Sharon Terry, ex-líder religiosa na faculdade e mãe caseira, que entrou no mundo da pesquisa médica quando as duas crianças pequenas dela foram diagnosticadas com uma doença rara conhecida como pseudoxantoma elástico (PXE). Nesta fantástica conversa, Terry explica como ela e o marido se tornaram cidadãos cientistas, trabalhando turnos de meia-noite no laboratório para encontrar o gene por trás do PXE e introduzir ordens que exigem que os pesquisadores compartilhem amostras biológicas e trabalhem juntos.

전 대학교 사제이자 그녀의 두 아이가 탄력섬유성가황색종이라는 희귀병에 걸렸을 때 의학연구계를 뒤집어 놓은 전업주부인 섀런 테리를 만나보세요. 이 강연에서 테리는 그녀와 그녀의 남편이 어떻게 탄력섬유성가황색종 관련 유전자를 찾기 위해 심야 교대를 하고 연구자들에게 생물학적 샘플을 공유하고 협력하도록 요구하는 기반을 확립하는 민간 과학자가 되었는지를 설명합니다.

Lernen Sie Sharon Terry kennen: eine ehemalige Schulseelsorgerin und Hausfrau, die die wissenschaftliche Welt im Sturm eroberte, als ihre zwei Kinder mit der seltenen Krankheit "Pseudoxanthoma Elasticum" (PXE) diagnostiziert wurden. In diesem überwältigendem Talk erklärt Terry, wie sie und ihr Mann zu Bürgerwissenschaftlern wurden, Mitternachtsschichten in einem Labor arbeiteten, um das Gen hinter PXE zu finden und wie sie Verfügungen erarbeiteten, die Forscher dazu verpflichteten, ihre biologischen Proben auszutauschen und zusammenzuarbeiten.

Meet Sharon Terry, a former college chaplain and stay-at-home mom who took the medical research world by storm when her two young children were diagnosed with a rare disease known as pseudoxanthoma elasticum (PXE). In this knockout talk, Terry explains how she and her husband became citizen scientists, working midnight shifts at the lab to find the gene behind PXE and establishing mandates that require researchers to share biological samples and work together.

Rencontrez Sharon Terry, une ancienne aumônière en milieu universitaire et mère au foyer qui a pris d'assault le monde de la recherche médicale lorsque ses deux jeunes enfants ont été diagnostiqués comme atteints d'une maladie rare connue sous le nom de pseudoxanthome élastique (PXE). Dans cette intervention spectaculaire, Terry explique comment elle et son mari sont devenus des scientifiques citoyens, travaillant à minuit au labo pour trouver le gène derrière le PXE et établir des mandats exigeant que les chercheurs partagent les échantillons biologiques et travaillent ensemble.

One of those attending the recent White House gathering where Obama announced the Precision Medicine Initiative was a woman who has worked tirelessly as a patient advocate for over twenty years. She’s an award winning scientist and the CEO of the Genetic Alliance: Sharon Terry joins us to kick off a new series, Personalized Medicine and the Consumerization of Healthcare.

We have a very experiential Dream Journal in which our guest Sharon Terry leads gentle dream explorations first with Katherine and later with our caller Ellen. But we start off by discussing the principles of gestalt practice and it roots in the work of Fritz Perls and Sharon's collaborator Christine Price. The essence of gestalt is that all of the parts of my dream are somehow parts of me. Gestalt Awareness Practice is an adaptation which focuses on body awareness and allowing feelings to come into awareness rather than on fixing things. We laugh about the motto, "If it's broke, don't fix it" and how finding a feeling of frustration is a sign that transformation in imminent. Sharon Terry is part of the Tribal Ground organization, and they provide workshops and book groups including a dream workshop called Mirrors in the Dark. Books we talked about include Gestalt Therapy Verbatim by Fritz Perls, BIO: Sharon has an eclectic mix of training and experience. She has a master's degree in theology, was a chaplain, and has practiced “engaged Buddhism” for several decades. After a transformational experience in a workshop led by Chris, Sharon became a student and practitioner of Gestalt Awareness Practice. She integrates awareness practices into her work in biomedical research and health, offering companies, academic groups, and nonprofits tools and practices to show up fully and trust process. Sharon offers Intro to GAP and other workshops in the DC area and online. She seeks to participate in and create experiences for individuals and communities that give space and time to being. You can get in touch with Sharon Terry through TribalGround.com We play clips from the following two guest-selected songs: Heart with These Dreams and All I Have to Do is Dream sung by Emmy Lou Harris and Alison Krause, Live ambient music by Rick Kleffel. Show aired on September 4, 2021. The Dream Journal is produced at and airs on KSQD Santa Cruz, 90.7 FM, streaming live at KSQD.org 10-11am Saturday mornings Pacific time.  Catch it live and call in with your dreams or questions at 831-900-5773 or at onair@ksqd.org. If you want to contact Katherine Bell with feedback, suggestions for future shows or to inquire about exploring your own dreams with her, contact katherine@ksqd.org, or find out more about her at ExperientialDreamwork.com. The complete KSQD Dream Journal podcast page is found here. You can also check out The Dream Journal on the following podcast platforms:  Rate it, review it, subscribe and tell your friends. Apple Podcasts Google Play Stitcher  Spotify