Newsletter

Patient Leader Podcasts

Outstanding health podcasts created by patient leaders.

Do you have a podcast that should be included here? Click to request an invitation to join Health Podcast Network.
Request an Invitation
Patient Leader Podcasts

Latest Episodes

SRF LT Webinar, MDBR, Therapies, Learning at Conferences. #S10e141

JOIN SRF LT on Thursday: Volunteer Info session with Leadership Team is this week:  https://syngap.fund/LT Thursday 5/23 at 5:30 Pacific.   MDBR is 3 weeks away! https://Syngap.Fund/Unite   $5k match https://x.com/phalliburton/status/1792288377049415835   It’s all about therapies.  Precision Genetic and Repurposed.   Conferences are where we engage professional communities around SYNGAP1 & SRF.  - Last week I was at Milken Global.  All diseases are talking about biomarkers & endpoints. https://milkeninstitute.org/events/global-conference-2024/program  - This week I was at the #Ultragenyx Bootcamp with our CSO https://www.ultragenyx.com/video-this-bootcamp-helps-parents-advance-rare-disease-research/ So good to see Kathryn energized by this role.  - ASGCT was last week and that means announcements…  - Kathryn and I are off to BIO in June in San Diego.   Ionis for Angelman https://www.linkedin.com/posts/cureangelman_exciting-news-for-the-angelman-syndrome-community-activity-7196872264976322563-_rvX  Capsida for STX https://www.linkedin.com/posts/graglia_capsida-biotherapeutics-presents-new-preclinical-activity-7194004214635716608-M01Y  Encoded for STX https://www.linkedin.com/posts/stxbp1-foundation_encoded-therapeutics-provides-pipeline-updates-activity-7196942568859787265-leKO  Nasha at FOXG1 https://www.youtube.com/watch?v=ELKijSx0uwQ   Repurposed therapies are just as important.   Cost effective.  Globally available. They are here now.  We must act, the suffering is immense. They show us what is improvable and therefore inform clinical trial design. They are not compromising other trials.  And to even suggest that is unethical if it suggests people should hold off on helping patients.  How about we just diagnose more kids?  Or think harder about which kids go to which trials? Precision Genetic Therapies are going to be more effective than repurposed drugs, people will happily participate in trials.   Review of repurposed drugs: RAVICTI Rx- 10+ patients with Dr. Grinspan, not all but a few have had significant seizure reduction.  I remain worried about cost and look to STXBP1 and SLC6A1 for guidance here. NORTRIPTYLINE Rx - Has helped me, a handful of families are getting a Rx.  I am hopeful that some researcher does an investigator led trial.  But until then, ask your Neuro. ACETYL-LEUCINE is a Nutraceutical - Update 1 has really been noticed and Update 2 will share a few potential mechanisms of action.  Many are trying this drug from https://bit.ly/tanganil24 Encouraging… no, updating.  Please share data with us if you are trying.  We are collecting case studies for Update 3.  Thank you to the team here.   NEWLY DIAGNOSED? New families have resources here! https://syngap.fund/Resources SOCIAL MATTERS - AMPLIFY SRF TO MAKE SURE FAMILIES FIND US  - 1,010 YouTube.  https://www.youtube.com/@CureSYNGAP1   - 9,900 Twitter https://twitter.com/cureSYNGAP1  - 3,560 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ - 49k TikTok https://www.instagram.com/curesyngap1/ Podcasts, give all of these a five star review! SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917Episode 141 of #Syngap10 - May 20, 2024 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1
May 20, 2024
Play now

Replay: How to Avoid Burnout by Recognizing the Difference Between Depersonalization and Detachment

Replay - Originally Aired Sept 21st 2021; When you hear the word ‘detached,’ what do you think of?  What about ‘depersonalized’? Do you know what the difference between detachment and depersonalization is?  Well, in this week’s solo episode of the Healthcare Provider Happy Hour, I will be discussing the difference between depersonalization; one of the core components of burnout, and detachment. I will share strategies and insights on how these components can lead to, and prevent burnout, along with key strategies to help you navigate them.  Listen in to learn: How to create boundaries to avoid toxicity inside and outside the workplace What signals to watch for in noticing not only emotional signs, but also physical signs within ourselves to alert us of toxicity  Why health boundaries are critical to detach yourself when needed How to be aware of a negative environment and how to approach the situation  Grab your drink of choice and join the conversation! Resources 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! 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.
May 14, 2024
Play now

Who will fight for our kids when we aren’t there? SRF and your crew. #S10e140

Read Jackie’s article on profound autism, be grateful she is an SRF Leader. https://helenjournal.org/april-2024/achieving-equity    Watch Brett’s 2 min talk on his son, he’s on your team too. https://x.com/UFDTech/status/1785111914168594894    Look at all these families that raise a quarter million dollars via #Sprint4Syngap 2024 syngap.fund/sprint24 - https://givebutter.com/ALjJXJ  - $243k, 844 donors  - Kaia’s event was wonderful https://curesyngap1.org/syngap-warriors/kaia/ - Reef’s family also found connection by helping SRF, video coming soon.   Conferences are where we engage professional communities around SYNGAP1 & SRF.  - Last week Vicky was at WODC. https://www.terrapinn.com/conference/world-orphan-drug-congress-usa/ - This week Heather Mestemaker was at the GG DDC. https://globalgenes.org/event/rare-disease-drug-development/  - Next week I’ll be at Milken Global, it takes a team. https://milkeninstitute.org/events/global-conference-2024/program It takes a village.   We need to support efforts to help our kids and accept that the system will always fall short, the need for a strong SRF will only grow.  The more we unify, the faster it grows.   v1 Drugs - Data - Biomarkers & Endpoints v2 now we add Improve Clinical Care (NHS Expansion & Repurposing) - Build a sustainable organization.   NEWLY DIAGNOSED? New families have resources here! https://syngap.fund/Resources SOCIAL MATTERS  - 990 YouTube.  https://www.youtube.com/@CureSYNGAP1   - 3,552 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ - 9,852 Twitter https://twitter.com/cureSYNGAP1  - 49k TikTok https://www.instagram.com/curesyngap1/ Podcasts, give all of these a five star review! SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917Episode 140 of #Syngap10 - May 2, 2024 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1
May 2, 2024
Play now

Seize the Day: Embracing Life’s Moments with Alzheimer’s

Perhaps you can’t cure or even prevent Alzheimer’s, but what if you could slow the disease progression? Want to unlock the secrets to living in the moment with Alzheimer's? Get ready to embrace practical advice and actionable insights for a positive journey with Alzheimer's and dementia in this podcast with Danel Gibbs, MD.  He’s a retired neurologist with extensive knowledge in the anatomy of the brain and the disease process of Alzheimer's and dementia. His personal experience living with Alzheimer's provides a unique perspective, enhancing his credibility in discussing practical approaches to managing these conditions. He’s the author of "A Tattoo on My Brain" and "Dispatches from the Land of Alzheimer's," which offer a collection of essays and vignettes that provide valuable insights into the cognitive health and well-being of those living with Alzheimer's or dementia. His writing style, which simplifies complex scientific concepts, ensures that his work is accessible to a wide range of audiences, and his contributions to the understanding and management of Alzheimer's and dementia make him an essential guest on the podcast. Quotes:  “For those of us on the Alzheimer's journey, it's really important to embrace the moment and not dwell on the frustration of trying to remember the past and plan for the future. Happiness and peace come from focusing on the moment.” - Daniel Gibbs, M.D. “We don't have to wait for a cure. We can just do things that really make a significant difference, that are available, evidence proven, and don't cost anything. Except maybe a gym membership.” - Daniel Gibbs, M.D. In this episode, you will:  Explore real-life experiences of living with Alzheimer's and gain insights on managing the daily challenges.Discover the surprising link between sense of smell loss and Alzheimer's disease, and how it may impact early detection.Uncover the powerful impact of exercise on slowing the progression of Alzheimer's and enhancing overall well-being.Learn about dietary approaches that may help slow down the advancement of Alzheimer's disease. Resources mentioned: Trial MatchNational Institutes on Health - Clinical TrialsMind DietMediterranean Diet  After the Podcast Buy the Dispatches from the Land of Alzheimer's and A Tattoo on My Brain Watch the documentary A Tattoo on My Brain Read Daniel’s AlzAuthors Post Visit Daniel’s Blog Listen to Previous Podcasts: Daniel Gibbs, MD Untangles His Personal Battle Against Alzheimer’s Disease Writing Through the Fog 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
April 30, 2024
Play now

Embracing Mindset Mastery for Healthcare Providers: A Journey to Fulfillment and Emotional Stability

In this week's episode, discover the transformative power of mindset with Michael Mojo as he joins me, on the Healthcare Provider Happy Hour. In a candid conversation, Michael reveals how he evolved from a student grappling with adversity to a beacon of wisdom for Australia's healthcare elite. We unravel the significance of mindset in safeguarding healthcare providers from the perils of stress and burnout, while simultaneously paving a path toward a more fulfilling practice. Michael's personal narrative is not just compelling; it serves as a testament to the resilience and potency of human potential when aligned with purpose and passion. As we raise our glasses to the well-being of those who care for us, we discuss the critical role of integrated team environments in healthcare. The often-overlooked soft skills emerge as heroic characters in our tale, proving essential for effective leadership and teaching.  Stories are shared that underscore the necessity of reconnecting with the initial spark that ignited our healthcare journeys. Through the lens of Michael's 'success map,' we uncover how defining personal boundaries and core values can arm healthcare professionals against the inherent complexities of patient care, ensuring they remain steadfast to their principles. Finally, we toast to the symbiosis of emotional stability and success. Reflections on the deep-rooted connection between values, purpose, and fulfillment offer a backdrop to the age-old wisdom of yin and yang. In embracing life's contrasts, we find a wellspring of love and understanding that transcends the fleeting thrill of passion. Our conversation ventures into the realm of self-investment and self-care, advocating for practices that foster a durable appreciation for our personal and professional lives, even amidst the challenges faced in healthcare. Join us and let Michael's insights fortify your resolve to thrive in both your career and personal life. 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 Michael Mojo here:  www.michaelmojo.com Instagram: @MichaelM0j0oo  Facebook: @MichaelMojo00  YouTube: @MichaelMojo00  TikTok @MichaelMojo00  X (Twitter) @MichaelMojo00  Linked In @MichaelMojo00 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.
April 30, 2024
Play now

Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska

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
April 25, 2024
Play now

SRF is a “Get-to…” not a “Have-to..”  Do something & Go big.  #S10e139

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
April 23, 2024
Play now

Episodio 14: Diana Ramirez y Su Hija Luhana Desde Perú

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
April 19, 2024
Play now

Laughter, Tears and Connection: Discussing a Novel Born from Alzheimer’s Experience

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
April 16, 2024
Play now

Replay: Finding Motivation and Inspiration During Difficult Times as a Healthcare Provider

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 
April 16, 2024
Play now

Rainy Schlosser, SYNGAP1 Mom to Hope, discusses her 4-year-old daughter’s journey in life and across the US for 3 studies!

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
April 11, 2024
Play now

The Bravery of the Brokenhearted – A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman

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/
April 11, 2024
Play now

Grateful and grieving. SRF is growing with our community, all 1,400 of us! #S10e138

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
April 4, 2024
Play now

Episodio 13: Lucía María, Traductora para el Libro “Mas de Todo”

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
April 4, 2024
Play now

The Caregiving Podcaster: Broadcasting Resources from His Unique Vantage Point

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
April 3, 2024
Play now

The Caregiving Podcaster: Broadcasting Resources from His Unique Vantage Point

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
April 3, 2024
Play now

Confronting Burnout and Cultivating Resilience in Healthcare: Insights from a Neurosurgeon’s Journey

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.
April 2, 2024
Play now

#S10e137

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
March 26, 2024
Play now

When Duty Becomes Privilege: Reframing Caregiving as an Act of Love

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
March 24, 2024
Play now

Join our community and never miss
your favorite episodes

Join Our Newsletter

We gratefully acknowledge the many organizations that have generously supported our podcasts and platform.

Network Sponsors and Advertisers

Event and Media Partners