Patient Leader Podcasts

Connect with Kara, host of The Special Needs Mom Podcast: Instagram: https://www.instagram.com/thespecialneedsmompodcast/ Website: https://www.kararyska.com/ Coaching Opportunities Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me Join The Special Needs Mom Podcast Community FaceBook Group!! Click here to Request to Join

SRF is a “Get-to…” not a “Have-to..”  Do something & Go big.  #S10e139 Talking with John Get vs Have (https://www.youtube.com/watch?v=J5oBo9zcRUE)SRF is the same:- Raise Funds to Change the Future- Volunteer, contribute to a larger effort- Connect with other families- Share our experience to make broader knowledge- Learn from each other and scientists Raise Funds#Sprint4SYNGAP 2024 syngap.fund/sprint24 - https://givebutter.com/ALjJXJ - Newsletter https://mailchi.mp/curesyngap1.org/sprint4syngap?e=8531ca92fd  - $197k, 521 donors - See you Saturday, enjoy it. - It’s a get to, people get to support our incredible efforts. VolunteerACTION IS THE ANTIDOTE TO DESPAIR - Joan Baez - State Reps - May 3rd! - Advocates - Jackie Kancir and Jess Johnson are killing it. - Many other roles  - DEI too. Connect with other Families - Jaxon Movie is up https://curesyngap1.org/resources/movies/ - Sprint events. Volunteer. Etc. - Hope drove across the country  Fundraiser https://givebutter.com/zDUIfN  Reel https://www.facebook.com/reel/421525020629131   Interview https://curesyngap1.org/podcasts/syngap1-stories/ #28 Share our experience to make broader knowledge - FB: www.facebook.com/groups/syngap/  - CHOP is at 99! [email protected]  - Cinci is still recruiting too. Info - https://drive.google.com/file/d/1jLAIe6FTNRGlhPZpouDlYJNPv-d6ICNW/view?usp=drive_link; Survey - https://redcap.research.cchmc.org/surveys/?s=4CYCNJ47RCL7HLN8 Learn from each other & scientists - https://curesyngap1.org/podcasts/cafe-syngap1/  - Coming soon: Missense Server is Awesome, Frogs too. - NAL: https://curesyngap1.org/blog/drug-repurpose-update-1-tanganil-acetyl-leucine-for-potential-management-of-syngap1-related-disorder-symptoms/ - Remember new families have resources too! https://syngap.fund/Resources  I’m learning too!  Just accepted to #LeadersLink of #FasterCures! - Presshttps://milkeninstitute.org/article/leaderslink-cohort-2024-2025-fastercures  - X https://x.com/JMGraglia/status/1782778094589460812  - LinkedIn https://www.linkedin.com/posts/graglia_please-join-us-in-welcoming-the-newest-leaderslink-activity-7188548477889449987-DmAX SOCIAL MATTERS - 979 Subscribers on YouTube.  https://www.youtube.com/@CureSYNGAP1  - 3,529 Subscribers on LinkedIn.  https://www.linkedin.com/company/curesyngap1/ - 9,846 Followers on Twitter https://twitter.com/cureSYNGAP1 Podcasts, give all of these a five star review!SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917 Episode 139 of #Syngap10 - April 23, 2024#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1

Ahora nos vamos al Sur de América para oír la historia de Diana Ramirez y su hija Luhana. Su caso fue el primer diagnóstico con Syngap1 encontrado en Perú. Con un reciente diagnóstico, Diana nos abre las puertas de su hogar para contarnos todo sobre el proceso de obtener un diagnóstico y cómo poco a poco se va informando y conociendo más de Syngap1 con el propósito de ayudar a su hija. Entre todo, nos demuestra su valentía y resiliencia para salir adelante. Bio de ⁠⁠Merlina⁠⁠ Información sobre SRF & SYNGAP1: ⁠⁠Syngap Research Fund⁠⁠ ⁠⁠Que es SYNGAP1?⁠⁠ ⁠⁠Recursos en Español⁠⁠ Donaciones: ⁠⁠https://syngap.fund/Donate⁠⁠ ⁠⁠SYNGAP1 & Epilepsia⁠⁠ ⁠⁠Porque es Importante Obtener un Diagnóstico Genético⁠⁠ ⁠⁠Cómo Obtener Pruebas Genéticas Gratuitas en EEUU⁠⁠ ⁠⁠Planificación Financiera Futura para las Personas con Discapacidades ⁠⁠ Comentarios: ⁠⁠⁠[email protected]⁠⁠⁠ Conéctate con SRF (@curesyngap1): ⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠Twitter⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠TikTok⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP10 Video Podcast⁠⁠⁠ Semanal⁠⁠⁠⁠ con Mike Episodio 14 Café SYNGAP1, Abril 18, 2024 #CafeSYNGAP1 #Syngap #SYNGAP1 #CafeSYNGAP1Luhana #Peru #epilepsia #epilepsy #epilepsyawareness #autismo #autismawareness #discapacidadintelectual #id #enfermedadesraras #FondodeInvestigacionSYNGAP #SynGAPResearchFund #abogacia #advocacy #patientadvocacy #neurologia #pruebasgeneticas #terapias #familia #apoyo

Delight in the surprising journey of Ruth Stevens, from crafting a stage play to penning a heartfelt novel about Alzheimer's. Delve into the unexpected twists and turns as Ruth shares her personal experiences and the emotional impact of her work. Stay tuned for eye-opening insights on turning personal stories into fiction and a sneak peek into her upcoming duology. Get ready to be captivated by Ruth's incredible journey, as she shares the highs and lows of her creative process. For our March installment of Books & Chit Chat, our monthly Book Club collaboration with Aging & Amazing, we talk with Ruth Stevens, a former public relations professional from New York City and LA, and the author of the debut novel "Stage Seven," inspired, in part, by her personal experience dealing with her mother's Alzheimer's disease and decline. A fiction story acquisitions editor with AlzAuthors and a member of the Dramatists Guild of America and Women's Fiction Writers Association, Ruth brings a unique perspective to her writing, infusing humor and tenderness into a difficult topic. Her storytelling abilities, honed through a career in creative writing, advertising campaigns, and numerous articles for magazines, newspapers, and journals, shine through in her work, offering a compelling and relatable portrayal of Alzheimer's and its impact on family dynamics. Like enjoying a performance of her play, you’ll laugh, you’ll cry, you’ll learn a lot. Have a listen. Quote:  “I feel like your play gave me permission to move on with my life”. - Audience member In this episode, you will:  Explore real-life Alzheimer's caregiving experiences and gain insights into navigating the challenges with compassion and understanding.Discover the art of turning personal stories into compelling fiction, finding inspiration from the heart-wrenching yet beautiful moments of caregiving.Uncover the captivating journey within the novel "Stage Seven" by Ruth Stevens, delving into the emotional landscape of Alzheimer's and its impact on families.Understand the profound impact of Alzheimer's on family dynamics, gaining new perspectives on how to navigate relationships and support systems during difficult times. After the Podcast Buy the Book Stage Seven Find more about Ruth Stevens at https://ruthfstevens.com/ Listen to Ruth on on the Hilarity for Charity (HFC) and AlzAuthors Summer Book Club Follow Ruth on Social Media: Instagram  Facebook Goodreads  Blog  About the Podcast  AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys. We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here. Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here. Thanks for listening. We are a Whole Care Network Featured Podcast Proud to be on The Health Podcast Network Find us on The World Podcast Network and babyboomer.org Want to be on the podcast? Here’s what you need to know We've got merch! Shop our Store

Replay- Originally aired Sept 14th 2021; What is the difference between external motivation and internal motivation? What role do they play in our work and is one better than the other? In this week’s solo episode, I will be discussing how motivation and inspiration affect our work as healthcare providers, and our everyday lives. It can be hard to find motivation during these difficult times, but by learning how to transfer external motivation into internal motivation and inspiration, it allows us to avoid burnout and let positive energy in.  Listen in to learn: The difference between inspiration and motivation  How to let in positive energy, and let go of any negative energy What to do when you’re feeling unmotivated in your work   How to transfer external motivations into internal motivations  Grab your drink of choice and join the conversation! Disclaimer The Healthcare Provider Happy Hour Podcast makes no warranty, guarantee, or representation as to the accuracy or sufficiency of the information featured in this Podcast. The information, opinions, and recommendations presented in this podcast are for general information only and any reliance on the information provided in this podcast is done at your own risk. This podcast should not be considered professional advice. Please speak with your own healthcare practitioner when seeking medical advice. Connect with Jennifer George: @bestobsessed_with_jenn | Instagram Jennifer George | Website @jenngeorge08) | Twitter Jennifer George | Facebook Click here to check out my book about connecting and communicating with patients to empower their experiences! Stay up to date on everything happening with the Healthcare Provider Happy Hour by subscribing to my weekly newsletter at www.jennifergeorge.co 

Show Notes Rainy Schlosser is in the middle of a 7,500 mile drive-a-thon to participate in 3 studies to help find a cure for SYNGAP1. She talks with Ashley about the studies, her daughter Hope's incredibly difficult medical journey, what makes Hope happiest, an EEG with Curious George, and the wonderful connections they are making along the way! This is a fundraiser, so please check out Syngap.Fund/Hope4theCure! All episodes are available at ⁠⁠⁠⁠⁠⁠Syngap.Fund/Stories⁠⁠⁠⁠⁠⁠. ⁠⁠Hope's Warrior Story⁠⁠⁠ My SYNGAP1 Drive-a-thon, Hope4theCure Connect with Rainy & Hope: Instagram - @Hope4theCure YouTube - @Hope4theCure Facebook - Hope SelahMay Other Links Cannonball for the Cure Connect with ⁠⁠⁠⁠⁠⁠Ashley⁠⁠⁠⁠⁠⁠: ⁠⁠⁠⁠⁠⁠⁠[email protected]⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠Ashley's SRF Bio⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Nathan’s Warrior Story⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ SYNGAP1 Stories ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Episode 001⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ - Ashley Frye SRF & SYNGAP1 Info:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠What is SYNGAP1?⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Syngap Research Fund⁠⁠ - ⁠⁠⁠⁠https://curesyngap1.org/⁠⁠⁠⁠ ⁠⁠⁠⁠SYNGAP1 Resources for Newly Diagnosed Families⁠⁠⁠⁠ ⁠Wednesday Warriors⁠ ⁠⁠⁠⁠Supporting SYNGAP1 Siblings⁠⁠⁠⁠ Donate - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://Syngap.Fund/Donate⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 & Epilepsy⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Why Getting a Genetic Diagnosis Matters⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠How to Get Free Genetic Testing⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Special Needs Trusts⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠SYNGAP1 Family Day 2023 – A Beacon of Hope!⁠ (blog with videos) ⁠⁠⁠⁠Pre-register⁠⁠⁠⁠ for SYNGAP1 Conference 2024 Connect with SRF (@curesyngap1): ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Twitter⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠TikTok⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ YouTube ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP10 Weekly Video Podcast⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠w/ Mike SynGAP Research Fund ⁠⁠⁠⁠⁠⁠⁠⁠Apple Podcast Channel⁠⁠⁠⁠⁠⁠⁠⁠ Family Zoom Meeting (Weekly on Wednesdays, 8PM ET): ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Syngap.Fund/SRFfam⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Meeting ID - 972 0059 2178 Passcode - 848417 Sibling Zoom Meeting (Monthly on 1st Thursday, 8PM ET): ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Syngap.Fund/SRFfam⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ⁠⁠⁠⁠⁠⁠[email protected]⁠⁠⁠⁠⁠⁠ Music: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠In the Forest... by Lesfm from Pixabay ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Episode 028 SYNGAP1 Stories, April 11, 2024 #SYNGAP1StoriesHope #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp28 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #SyngapConf #SYNGAP1Siblings #Caregiver #Elopement #Behavior #Communication #Hope4theCure #Driveathon

ONCE UPON A GENE - EPISODE 225 The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman Noah Siedman was a big brother to Ben who had Sanfilippo Syndrome, a devastating disease that leads to childhood dementia and premature death. He joins me to talk about his sibling experience and dealing with grief. EPISODE HIGHLIGHTS As a sibling under potential pressure to not be a burden, do you still carry those feelings even after Ben's passing? It's hard as a sibling to see everything your parents are facing that's out of your control. As a sibling, there's a need to be on top of your own care and your own emotions. There were no casual complaints in my family growing up. It was either a disaster or business as usual. Filling in that middle space where you have a bad day and want to talk about it didn't exist. We've had to work on that as a family because that's not how we've functioned.  What coping mechanisms help you to write and talk about your experience? I came to the realization that I was going to be emotionally vulnerable, which is uncomfortable. Knowing I would have to talk about my experience and brother, I had to accept it, put it out front, and get really good at talking about it comfortably. I got more comfortable talking about the progression of my brother's disease and my feelings around him, and I used it as a shield.  What would you say to the young person who is living the same life you were living and what questions should people ask that person? The first thing that I would say, and maybe the best thing to ask that person, is about their roles. When do you feel like a sibling? When do you feel like a caregiver? When do you feel like you're an advocate? When do you feel like you are just you? I got stuck in trying to be a lot of those things at once, where the easiest role to ignore was being just me. But everything you push down morphs into something worse. Frustration turns into resentment, fear turns into trepidation, sadness becomes melancholy.  What are the misconceptions people have about death? The biggest problem with grief is that no amount of experience is applicable. It defies the ability to be prepared for it or to use your past to help you cope. I don't think grief gets easier, I think you get better at it. Those that try to give advice to people that are grieving are hanging on to the idea that that time will heal. It's not that your grief goes away, it's that you get better at it. How has your relationship with your sister changed? Ben's death brought us closer and we do a good job of communicating despite handling things differently. There's no right or wrong way to navigate life with a sibling who has a genetic disorder, so we don't judge each other and we're honest with each other.  As a parent, how do you help siblings to have a better experience? Abandon the idea that you owe siblings normalcy. My parents put a lot of effort into delivering normal childhood experiences. Instead, put that energy into helping your children articulate what they want. More important than chasing normal is helping siblings decide what's important to them and how to pursue it. LINKS & RESOURCES MENTIONED ONCE UPON A GENE - Episode 109 - A Rare Collection - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins https://effieparks.com/podcast/episode-109-what-i-know-for-sure 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/

TOGETHER WE ARE STRONGER  - 1,400 strong, thank you Jess & team. https://curesyngap1.org/blog/syngap1-census-2024-update-61-in-q1-2024-total-1400/  - Stoke webinar: one of the most important considerations for deciding which disease to work on was, “…how strong is the patient advocacy group?”   - Stoke CMO Barry Ticho, MD, PhD, FACC during webinar 4/2/24 to discuss findings of STK-001   WELCOME AND CONNECT  - New parents are coming fast, reach out to them, tell them how much hope to have.  - Connect, connect, connect.   - San Diego next week: https://curesyngap1.org/resources/movies/jaxon/   - Hope https://curesyngap1.org/blog/my-syngap1-drive-a-thon-hope4thecure/ - TU to Emily Barnes who is at FasterCures meeting today in Boston, see #S10e98 to see my thoughts about this workshop https://www.youtube.com/watch?v=iOLjUdVUtqo   TEAM IS GROWING  BOARD - https://www.eurekalert.org/news-releases/1038978  CSO - https://www.eurekalert.org/news-releases/1040061  COO - You?   PRESS  - UK https://www.channel4.com/news/govt-send-funding-boost-still-billions-short-says-tory-mp-with-affected-family/  - GA https://www.gpb.org/news/2024/04/03/80-of-rare-diseases-are-genetic-thats-why-whole-genome-sequencing-can-help/    What does my genetic report mean?  We wrote a blog, but as I’ve had this conversation a few dozen times, my answer is simpler now.  Is it missense or is it truncating?  If missense, do more research, if truncating, it is in the first 4 exons (p. Address of 129 or lower). Who else has it?  Look on ClinVar and call SRF. Blog: https://curesyngap1.org/blog/understanding-your-genetic-report-with-syngap1-a-rare-disease/   STUDIES https://curesyngap1.org/blog/my-syngap1-drive-a-thon-hope4thecure/  CHOP: [email protected]  Adults:  - Press Release: https://www.eurekalert.org/news-releases/1040062  - Study Info:  https://drive.google.com/file/d/1tOdodcV7E5ROOHWyLn8a48x1WNBOr-U2/view  QOL: https://Syngap.Fund/QOL24 39 and counting.   #Sprint4Syngap 2024 Total: $168,572 from 347 people Tavilla: $126,385 from 62 Big thanks to them and all teams especially those already over $1k, Phoebe, Kaia, Louie, Kiera, Theo, Hadley & Gracyn. https://curesyngap1.org/events/featured/sprint4syngap-2024/ https://givebutter.com/ALjJXJ   REPURPOSING  - NAL, blog coming.  - Ravicti, enrolled, and blog on Butyrate coming.  - Nortriptyline, has been game changing, discussing a larger trial.   REFLECTIONS  - Family Medical Leave Act #FMLA https://www.dol.gov/general/topic/benefits-leave/fmla  - Homeschooling… again, avoid the kneejerk.  See #S10e64 https://www.youtube.com/watch?v=01uhSjxGgGE    - Tony update.  Grateful and grieving.   SOCIAL MATTERS 967 Subscribers on YouTube.  https://www.youtube.com/@CureSYNGAP1  3,483 Subscribers on LinkedIn.  https://www.linkedin.com/company/18940628/admin/feed/posts/ Socials matters so we can find more people, like this: https://curesyngap1.org/blog/an-emotional-journey-begins-after-a-syngap1-diagnosis/    Podcasts, give all of these a five star review! SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917   Episode 138 of #Syngap10 - April 4, 2024 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1

Lucía María es escritora de profesión, editora y traductora que vive en Guadalajara, México. Nos comparte su pasión y experiencia con la escritura, traducción de texto, el lenguaje en diferentes culturas. También nos cuenta su experiencia con el Libro “Más de Todo”, escrito por Janie Reade que se trata de como una madre alivió sus cargas emocionales y mejoró para su hijo que es diagnosticado con Syngap1. Al hacer la traducción de Más de Todo, de cierta forma Lucía acompaña a Janie en ese camino donde ella iba haciendo diferentes cambios para su vida y la de su hijo. Nos invita a leerlo para sentirnos acompañados en este viaje de vida el cual no estamos solos y así poder aliviar algunas cargas emocionales. Consiga "Mas de Todo" en Amazon Bio de ⁠⁠⁠⁠Merlina⁠⁠⁠⁠ Información sobre SRF & SYNGAP1: ⁠⁠⁠⁠Syngap Research Fund⁠⁠⁠⁠ ⁠⁠⁠⁠Que es SYNGAP1?⁠⁠⁠⁠ ⁠⁠⁠⁠Recursos en Español⁠⁠⁠⁠ Donaciones: ⁠⁠⁠⁠https://syngap.fund/Donate⁠⁠⁠⁠ ⁠⁠⁠⁠SYNGAP1 & Epilepsia⁠⁠⁠⁠ ⁠⁠⁠⁠Porque es Importante Obtener un Diagnóstico Genético⁠⁠⁠⁠ ⁠⁠⁠⁠Cómo Obtener Pruebas Genéticas Gratuitas en EEUU⁠⁠⁠⁠ ⁠⁠⁠⁠Planificación Financiera Futura para las Personas con Discapacidades ⁠⁠⁠⁠ Comentarios: ⁠⁠⁠⁠⁠[email protected]⁠⁠⁠⁠⁠ Conéctate con SRF (@curesyngap1): ⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Twitter⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠TikTok⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP10 Video Podcast⁠⁠⁠ Semanal⁠⁠⁠⁠⁠⁠ con Mike Episodio 13 Café SYNGAP1, Abril 4, 2024 #CafeSYNGAP1 #Syngap #SYNGAP1 #MasDeTodo #MoreOfEverything #LuciaMaria #Escritora #JanieReade #epilepsia #epilepsy #epilepsyawareness #autismo #autismawareness #discapacidadintelectual #id #enfermedadesraras #FondodeInvestigacionSYNGAP #SynGAPResearchFund #abogacia #abogaciadepacientes #advocacy #patientadvocacy #neurologia #pruebasgeneticas #terapias #familia #apoyo

When you’re caregiving, it can often feel like you are out there on your own without direction or resources. Sometimes, it can even feel like your healthcare providers aren’t able to meet your needs. If any of this sounds familiar, this episode will be of comfort. Our special guest is Lance A. Slatton. Lance A. Slatton, the founder of a prominent home care company in southeastern Michigan, brings a wealth of personal experience and professional expertise to the table. His caregiving journey, rooted in profound connections with his grandparents and later involving the care of his grandmother during her dementia and his father's health crisis, has deeply influenced his perspective on family caregiver support. Drawing from these experiences, Lance established his own home care company, driven by a commitment to improving caregiver well-being and patient care. His unique insights, stemming from real-life situations, position him as a credible and valuable resource for individuals navigating similar caregiving challenges. Quotes:  Knowing you are not alone is crucial. Seek out others who can understand and relate to what you're going through and educate yourself. - Lance A. Slatton If you've seen one person with dementia, you've only seen that one person. There are so many different variables and all these situations. - Lance A. Slatton I wanted to put something out there that is talking to family caregivers. It's half book, half guide, going through the whole caregiving journey with a lot of great resources and information. - Lance A. Slatton In this episode, you will:  Uncover effective caregiving challenges and innovative solutions for better patient care.Learn how to utilize valuable resources for dementia care to improve your loved one's quality of life.Explore practical ways to enhance family caregiver support and well-being.Understand the impact of personal caregiving experiences on professional paths and career growth.Learn about upcoming collaborations on the All Home Care Matters PodcastHear about Lance’s forthcoming book! After the Podcast Enriched Life Home Care Services https://www.elhcs.com/ All Home Care Matters Podcast https://allhomecarematters.com/ Lance's Book: All Home Care Matters Official Family Caregivers' Guide Ethics of Social Media show: Social Media Episode Unboxing Show: Unboxing Episode About the Podcast  AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys. We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here. Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here. Thanks for listening. We are a Whole Care Network Featured Podcast Proud to be on The Health Podcast Network Find us on The World Podcast Network and babyboomer.org Want to be on the podcast? Here’s what you need to know We've got merch! Shop our Store

When you’re caregiving, it can often feel like you are out there on your own without direction or resources. Sometimes, it can even feel like your healthcare providers aren’t able to meet your needs. If any of this sounds familiar, this episode will be of comfort. Our special guest is Lance A. Slatton. Lance A. Slatton, the founder of a prominent home care company in southeastern Michigan, brings a wealth of personal experience and professional expertise to the table. His caregiving journey, rooted in profound connections with his grandparents and later involving the care of his grandmother during her dementia and his father's health crisis, has deeply influenced his perspective on family caregiver support. Drawing from these experiences, Lance established his own home care company, driven by a commitment to improving caregiver well-being and patient care. His unique insights, stemming from real-life situations, position him as a credible and valuable resource for individuals navigating similar caregiving challenges. Quotes:  Knowing you are not alone is crucial. Seek out others who can understand and relate to what you're going through and educate yourself. - Lance A. Slatton If you've seen one person with dementia, you've only seen that one person. There are so many different variables and all these situations. - Lance A. Slatton I wanted to put something out there that is talking to family caregivers. It's half book, half guide, going through the whole caregiving journey with a lot of great resources and information. - Lance A. Slatton In this episode, you will:  Uncover effective caregiving challenges and innovative solutions for better patient care.Learn how to utilize valuable resources for dementia care to improve your loved one's quality of life.Explore practical ways to enhance family caregiver support and well-being.Understand the impact of personal caregiving experiences on professional paths and career growth.Learn about upcoming collaborations on the All Home Care Matters PodcastHear about Lance’s forthcoming book! After the Podcast Enriched Life Home Care Services https://www.elhcs.com/ All Home Care Matters Podcast https://allhomecarematters.com/ Lance's Book: All Home Care Matters Official Family Caregivers' Guide Ethics of Social Media show: Social Media Episode Unboxing Show: Unboxing Episode About the Podcast  AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys. We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here. Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here. Thanks for listening. We are a Whole Care Network Featured Podcast Proud to be on The Health Podcast Network Find us on The World Podcast Network and babyboomer.org Want to be on the podcast? Here’s what you need to know We've got merch! Shop our Store

In this week’s episode, my conversation with Dr. Gary Simonds is deeply rooted in his personal revolution against burnout and offers insights for anyone in the trenches of healthcare. Join us for a heartfelt exchange as Gary recounts the pivotal moments where burnout in his neurosurgery department became undeniable. With wisdom and vulnerability, he unveils the journey he embarked on with burnout expert, Wayne Sotile, to turn the tide, fostering a culture of resilience that not only reduced complaints but also boosted team commendations.  His narrative is complemented by reflections from his fictional novel, "Death's Pale Flag," providing a poignant backdrop to our discussion on the psychological battles that healthcare professionals face daily. Navigating the choppy waters of healthcare can be taxing, but Gary and I share a beacon of hope through practical strategies for building resilience. From the subtle behavioral shifts that stress induces, to the art of maintaining patient care in the face of adversity, our exchange is rich with personal stories and strategies that anyone wearing a stethoscope can relate to.  We address the power of communication in healing not just patients, but also those who care for them, as we dissect techniques that range from mindfulness to journaling. This episode is an invitation to enhance your ability to listen and communicate with empathy, to prepare for tough conversations, and to embrace the shared human endeavor at the heart of healthcare. For leaders, team members, and anyone who has ever felt the burn of burnout, this is an essential listen. Grab your drink of choice and join the conversation! Disclaimer The Healthcare Provider Happy Hour Podcast makes no warranty, guarantee, or representation as to the accuracy or sufficiency of the information featured in this Podcast. The information, opinions, and recommendations presented in this podcast are for general information only and any reliance on the information provided in this podcast is done at your own risk. This podcast should not be considered professional advice. Please speak with your own healthcare practitioner when seeking medical advice. Resources Connect with Dr.Gary Simonds: Website: https://garyrsimonds.com/ Books: https://garyrsimonds.com/books-2/ Connect with Jennifer George: @bestobsessed_with_jenn | Instagram Jennifer George | Website @jenngeorge08) | Twitter Jennifer George | Facebook Click here to check out my book about connecting and communicating with patients to empower their experiences! Stay up to date on everything happening with the Healthcare Provider Happy Hour by subscribing to my weekly newsletter at www.jennifergeorge.co  Sponsorship Mindset Gap: Use code JENCAN20 at www.themindsetgap.com, a boutique consultancy firm arming employees and leaders with mindset tools to increase sales, bounce forward from adversity and reset Intention.

Genetic Therapy Companies (ignoring small molecules, see our pipeline here https://curesyngap1.org/syngap1-related-disorder-therapeutic-pipeline/)    Stoke Therapeutics #StokedAboutStoke Presser: https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-announces-landmark-new-data-support-potential  I did call this in #S10e111 https://youtu.be/i6EZUrqsn2g?si=RN3SLR2vHCjgAiGt&t=706  This study started in #S10e83 https://www.youtube.com/watch?v=7uK2dCs53Ew    Praxis Precision Medicines https://investors.praxismedicines.com/news-releases/news-release-details/praxis-precision-medicines-provides-corporate-update-and-11    Longboard Pharma  https://ir.longboardpharma.com/news-releases/news-release-details/longboard-pharmaceuticals-reports-full-year-2023-financial    Studies https://curesyngap1.org/blog/my-syngap1-drive-a-thon-hope4thecure/  CHOP: [email protected]  Adults: https://drive.google.com/file/d/1tOdodcV7E5ROOHWyLn8a48x1WNBOr-U2/view  QOL: https://Syngap.Fund/QOL24       Fundraisers 247 supporters have us at $79k Team Tavilla is over half of that at $47k Big thanks to them and all teams especially those already over $1k, Phoebe, Kiera, Kaia & Gracyn. Rifton bike for S4S anyone at $500+.  247 Supporters!https://curesyngap1.org/events/featured/sprint4syngap-2024/ https://givebutter.com/ALjJXJ   Social Matters 953 Subscribers on YouTube.  https://www.youtube.com/@CureSYNGAP1  Socials matters so we can find more people, like this: https://curesyngap1.org/blog/an-emotional-journey-begins-after-a-syngap1-diagnosis/    Podcasts, give all of these a five star review! SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917Episode 137 of #Syngap10 - March 26, 2024 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1

This is a replay of our book club discussion with our friends at Aging & Amazing. "Books & Chit Chat" is a monthly book club featuring a title from the AlzAuthors collection. Throughout the month, readers participate in a discussion in the book club's Circle community at Aging & Amazing, then meet with the author for an in-depth discussion of the book and the caregiving journey. The online discussions are typically moderated by Andrea Couture, but she was unavailable for this episode so AlzAuthor founder, manager and author Marianne Sciucco is in her place for this episode. Florrie Munat, the author behind "Be Brave, a Wife's Journey through Caregiving," brings a deeply personal and touching account of her caregiving experience for her husband, Chuck, who faced a stroke and Lewy body dementia. Through her memoir, Florrie provides a candid and insightful portrayal of the challenges and triumphs she encountered, offering a beacon of hope and understanding for caregivers navigating similar paths. Her tender storytelling and unwavering strength make her a compelling and relatable guest, bringing a wealth of wisdom and empathy to our discussion on the complexities of dementia caregiving. We're honored to have Florrie's unique perspective and compassionate voice on the Podcast. Quote: When love and duty are one, then Grace is within you. - Florrie Munat In this episode, you will: Gain insights into the caregiving journey for dementia patients and discover effective support strategies.Explore the therapeutic benefits of writing as a tool for caregivers to navigate their emotions and experiences.Learn how to effectively navigate complex family dynamics in the context of providing care for individuals with dementia.Discover the powerful benefits of journaling as a coping mechanism and reflective practice during the caregiving journey.Understand the unique challenges and symptoms associated with Lewy Body Dementia to better support individuals with this condition. After the Podcast Register for Books & Chit Chat Purchase Be Brave: A Wife’s Journey Through Caregiving, which is available as a paperback, and on Audible Note: We are an Amazon Associate and may receive a small commission on book sales at no cost to you Connect with Aging & Amazing Hear Florrie speak about Lewy Body Dementia on Untangling Alzheimer's & Dementia Read Florrie's AlzAuthors post: Memoir, Be Brave: A Wife’s Journey Through Caregiving by Florrie Munat About the Podcast AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys. We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here. Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here. Thanks for listening. We are a Whole Care Network Featured Podcast Proud to be on The Health Podcast Network Find us on The World Podcast Network and babyboomer.org Want to be on the podcast? Here’s what you need to know We've got merch! Shop our Store

In this bittersweet finale of "When Life Gives You Parkinson's," we reflect on the incredible journey we've shared over 124 episodes. From the very first episode to this one, we've laughed, cried, and learned together. Countless guests have graced our show, sharing their stories, insights, and expertise, making each episode a treasure trove of knowledge and connection. Hosts Larry and Rebecca take a moment to express gratitude to everyone who has contributed to the success of the podcast. Whether you've been a guest, a listener, or a supporter, your presence has made a difference. Through the highs and lows, the triumphs and challenges, we've built a community bound by a shared mission: to raise awareness, offer support, and ultimately find a cure for Parkinson's disease. As we bid farewell to "When Life Gives You Parkinson's," we carry with us the memories, the laughter, and the friendships forged along the way. Thank you, everyone, for being part of this incredible journey. Though this may be the final episode, the impact of our collective efforts will continue to resonate far beyond the confines of this podcast. From all of us at "When Life Gives You Parkinson's," thank you, and be well. EMAIL US: [email protected] JOIN PD AVENGERS: www.pdavengers.com Thanks to Rebecca Gifford, Niki Reitmayer, Chris Duncombe, Dila Velazquez, Rob Johnson, Greg Schott, and Corus Entertain. Special thanks to Parkinson Canada who has been there supporting the podcast since the beginning.

Replay - Originally aired Sept 7 2021; In this week’s solo episode of the Healthcare Provider Happy Hour, I will be discussing the recent article featured in the Harvard Business Review on ‘Helping Healthcare Providers Avoid Burnout.’ The article analyzed the sources of burnout and resilience against it. I discuss their findings from the study and how it relates to our work in healthcare, along with everyday life. Characteristics related to burnout such as; “activation,” and “decompression,” are discussed, along with how they relate to resilience against burnout. Listen in to learn: What activation & decompression mean and how they relate to burnout Key findings in the study and how I’ve seen it firsthand in my own work  Methods on how to reach the core issue if you are experiencing burnout  How to cater to our own strengths and weaknesses in our work And more! Grab your drink of choice and join the conversation! Resources Harvard Business Review Article: https://hbr.org/2018/10/helping-health-care-workers-avoid-burnout  Disclaimer The Healthcare Provider Happy Hour Podcast makes no warranty, guarantee, or representation as to the accuracy or sufficiency of the information featured in this Podcast. This podcast does not represent the views or opinions of any other entity.  The information, opinions, and recommendations presented in this podcast are for general information only and any reliance on the information provided in this podcast is done at your own risk. This podcast should not be considered professional advice. Please speak with your own healthcare practitioner when seeking medical advice. Sponsorship Mindset Gap: Use code JENCAN20 at www.themindsetgap.com, a boutique consultancy firm arming employees and leaders with mindset tools to increase sales, bounce forward from adversity and reset Intention. Connect with Jennifer George: @bestobsessed_with_jenn | Instagram Jennifer George | Website @jenngeorge08) | Twitter Jennifer George | Facebook Click here to check out my book about connecting and communicating with patients to empower their experiences! Stay up to date on everything happening with the Healthcare Provider Happy Hour by subscribing to my weekly newsletter at www.jennifergeorge.co

Do this study for UCB: https://Syngap.Fund/QOL24    Two killer publications: Boston - https://www.linkedin.com/posts/graglia_syngap-research-fund-announces-308000-multidisciplinary-activity-7173732255369035776-HC-9  Penn/ENDD -  https://www.sciencedirect.com/science/article/abs/pii/S153854422400021X  Email Info at CureSYNGAP1 dot org for PDFs!   Visit to UCSF - Exciting new proposal and wait for the Wilsey paper!   Background: https://www.youtube.com/watch?v=pagFzSmYK8E    Repurposing is moving apace!  More as we have it.  Ravicti. Butyrate. Nortriptyline. Acetylleucine.   Sprint4Syngap is our current fundraiser, get in there and join us! https://curesyngap1.org/events/featured/sprint4syngap-2024/  https://givebutter.com/ALjJXJ  Sprint4Syngap Total: $33,704. Tavilla Total: $6,695   Nasha Fitter at WH, is a masterclass in advocacy. https://www.linkedin.com/posts/nashafitter_this-rare-disease-day-i-was-invited-to-be-activity-7170089524402802688-50tE    Podcasts, give all of these a five star review! SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917   Episode 136 of #Syngap10 - March 16, 2024 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1

ONCE UPON A GENE - EPISODE 221 BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay I'm joined by Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay to discuss BeginNGS, a ground-breaking initiative that stands at the forefront of genetic sequencing and rare disease diagnosis.  EPISODE HIGHLIGHTS What led to the creation of BeginNGS? Rare genetic diseases are an immense health ecosystem challenge- receiving a timely diagnosis. On average, it takes 4.8 years to diagnose a child with a genetic disease, and meanwhile, symptoms continue to worsen and the disease progresses. The goal of BeginNGS is to prevent or reduce the impact on children with rare genetic diseases, minimizing suffering, cost and delay of diagnosis.  Why is BeginNGS an important initiative to support? Anyone connected to the rare disease community shares the same vision for a world where every rare disease patient receives the right effective treatment at the right time. That starts with changing the diagnostic odyssey and ensuring early, fast diagnosis. What is the mission of the BeginNGS Consortium? The BeginNGS Consortium is a partnership of pharmaceutical and biotech companies, sharing a vision of the right effective treatment at the right time. Our vision is ultimately to ensure every baby born in the United States has the opportunity to be screened for rare disorders. What differentiates this program and the consortium is that the patient communities have been represented from the beginning and the patient population communities has been impressive. Some of our working groups are led by members of the patient community to make sure that what's delivered is valuable to the patients.  What are the major pain points to leveraging newborn screening for preventable disorders and broad use of rapid diagnostic genome sequencing? Pediatricians rarely order genome sequencing. We estimate only 2% of children who need the testing get it. Additionally, even when testing is ordered, it doesn't always translate into optimal treatments and there can still be delays in life-saving treatments.  What does the future look like for BeginNGS? The BeginNGS Consortium is comprised of rare disease advocacy organizations, parent support groups, healthcare systems, policy makers, experts in academic medicine, biotech companies developing new genome sequencing methods and pharmaceutical companies developing new treatments for rare genetic diseases. We hope to increase the size of the consortium so we can grow the organization and capture every voice and represent every genetic disease. Another strong aspiration is to raise grant support and funding to complete and deploy our pivotal clinical trial.  LINKS AND RESOURCES MENTIONED BeginNGS https://radygenomics.org/begin-ngs-newborn-sequencing/ Alexion https://alexion.com/ ONCE UPON A GENE - EPISODE 213 - Finding Strength In Every Step https://effieparks.com/podcast/episode-213-finding-strength-in-every-step Frontiers 2024 Conference https://radygenomics.org/frontiers-conference/ 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/

ViiV Healthcare is the world’s  only pharmaceutical company dedicated exclusively to HIV, and in this episode, Ben meets its CEO, Deborah Waterhouse, to explore the company’s approach to HIV R&D and commercial success - as well as the controversies its global access strategy has attracted for its new long acting injectables. Deborah and Ben find they have much in common beyond both being Brits growing up in the 70s and 80s, from being students of the humanities choosing to make careers in health, to their favorite pop music.  https://viivhealthcare.com https://www.unaids.org/en https://www.who.int/health-topics/hiv-aids https://www.cdc.gov/hiv/default.html https://au.int/en/sa/oid #ViiV #pharma #HIV #AIDS #treatment #Prevention #PrEP #dualtherapy #longacting #injectables #globalaccess #globalequity #discrimination #positiveaction #womenleaders #IWD 

This International Women’s Day, we’re sharing the mic with Frontline AIDS. Yvette Raphael reflects on the challenges and setbacks girls and women face around the world in 2024, in a hard hitting conversation with Frontline AIDS’ Yumnah Hattas, Toyin Chukwudozie Executive Director of Nigeria’s Education As A Vaccine, and Beirne Roose-Snyder, Senior Director of the Preclusion Project.  https://frontlineaids.org https://www.evanigeria.org https://apha.org.za https://www.thepreclusionproject.org https://www.unaids.org/en https://www.state.gov/pepfar https://www.project2025.org #IWD #HIV #AIDS #pepfar #womensrights #antiabortion #forcedbirth #neocolonialism #reproductivehealth #choiceagenda