Patient Leader Podcasts

Jeff Sturchio catches up with friend of the pod, Dr. Meg Doherty, WHO’s Director of HIV, Hepatitis and Sexually Transmitted Diseases. It has been a busy week at the Munich AIDS Conference for the World Health Organization, and Jeff gets Meg to unpack their conference program, particularly the release global data on HIV, viral hepatitis and STIs. 

With the #PUTPEOPLEFIRST being the call to action here at the International Aids Society Conference 2024, youth advocate Sinentlantla Gogela catches up with Y-isha Raphael about the work she has been doing at the conference, her views on the current state of youth activism and advocacy.  Sinentlantla Gogela is one of the current APHA CHAMPIONS based in South Africa, passionate about uplifting her community, keeping young girls period positive and taking all the haters to task be it in meeting rooms or on social media. She is a student at UWC pursuing her BA in physiotherapy and psychology and hoping to use that education to further her community work and advocacy. Together they delve into the complexities of young African people taking on these big issues, keeping up with their mental health and standing up for their peers.

Ben talks with Hatice Beton and Alan Donnelly about why the G20 established a new partnership on Health & Development in 2018, just prior to the COVID-19 pandemic, and how the era of pandemics is radically transforming high-level political fora like this. Guests: Alan Donnelly - Executive Chairman Sovereign Sustainability And Development & Convenor of The G20 Health And Development Partnership Hatice Beton - Executive Director, G20 Health And Development Partnership Links: https://g20healthpartnership.com

Jeff and Ben sit down with Heidi Larson from the Global Listening Project, reflecting on how the HIV movement influenced pandemic preparedness.

Yvette and Ben meet Gilead’s Dr. Moupali Das to discuss the latest clinical trial results for a new prevention technology that reduces HIV transmission by 100 percent in women. How did the research go and what plans does the company have to provide for the 100s of thousands of girls and women in need across Africa?

The first full day of #aids2024, sees Ben and Jeff reflecting on the some powerful presentations from the opening plenary - all while Yvette is off chairing sessions of her own. Then friend of the pod, Emily Bass joins Ben and Jeff to discuss the perilous state of the largest funder of HIV services - the US tax payer, through the President’s Emergency Plan for AIDS Relief.  https://www.iasociety.org/conferences/aids2024 https://www.unaids.org/en https://www.state.gov/pepfar-aids-2024 https://thinkglobalhealth.org https://phc.org.ua/en https://www.tht.org.uk #aids2024 #HIV #diagnostics #treatment #Prevention #PrEP #ARVs #bipartisan #pepfar #protest #puttingpeoplefirst

In this podcast, host Marianne Sciucco is joined by an ensemble of talented poets to officially launch our anthology, Poetry for the Dementia Journey. This collection brings together caregivers who have personally navigated the complexities of caregiving, diagnosis, and emotional upheavals tied to Alzheimer's and dementia. They write about many of the situations common to caregivers: the impact of the initial diagnosis, moving into assisted living or memory care, saying goodbye. From touching moments with loved ones to the nuanced challenges of caregiving, these poems offer solace, understanding, and a break from the isolating silence often surrounding dementia. Whether you’re a caregiver, a family member, or someone seeking to understand the impact of Alzheimer's, this anthology and today’s episode provide a profound sense of connection and empathy. You'll experience a myriad of emotions, from sadness to joy, despair and hope. In the end, you will be comforted in knowing that you are not alone. Takeaways: ·      Gain insight into the profound impact of personal storytelling on Alzheimer's. ·      Understand the unique challenges and emotional impact of early onset Alzheimer's on families. ·      Explore the benefits of creative expression in providing holistic care for individuals with dementia. Purchase Poetry for the Dementia Journey Timestamps and page numbers: 2:30 Mariana Mcdonald, Diagnosis, p.30 5:06 Austin Alexis, Dementia Intrigue (not in book) 7:12 Sue Fagalde Lick, You Dance, p.80 8:42 Gail Thomas, A Daughter's Garland, p.114 10:28 Judith H. Montgomery, Mother's Day at Aspen Ridge Assisted Living, p.101 12:10 Ann Campanella, Child Mother, p.62 13:43 Margaret Stawowy, Mother Country, p.162 15:33 Eileen Kennedy, Ritual, p.59 16:41 Joy Johnston, At the Crossroads, p.167 17:47 Sherri Levine, Stealing Flowers from the Neighbors, p.147 20:37 Patricia McKernon Runkle, Given the Mother Word PURE, p.119 21:52 Alan Bern, Boxae, p.17 24:59 Kelly Dumar, Mrs. Bean's Snow, p.158 29:00 Renee Terry Mucci, Life, p.127 30:55 Eileen Kennedy, End of Day, p.60 31:59 Mariana Mcdonald, All the Books, p.31 34:10 Austin Alexis, The Patient, p.95 36:58 Gail Thomas, Alchemy, p.116 39:47 Alan Bern, Dream of Tangles, p.15 40:40 Judith Montgomery, Sometimes, p.103 43:56 Kelly Dumar, How He Asks, p.157 45:15 Ann Campanella, Beyond Words, p.63 47:01 Margaret Stawowy, Signs of Her Decline, p.163 About the Moderator Marianne Sciucco 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  

Originally aired Nov 9 2021; In this week’s episode, I am joined by Laura Purdy, the Co-founder and COO of MD Integrations, a telemedicine technology company connecting virtual healthcare providers with patients using a best-in-class telemedicine portal integrated with a physician-only clinical network.  Laura just wrapped up 14 years as an officer in the US Army serving as a family physician. Previously, she became one of the Regional Medical Directors of hims & hers, and entered the telehealth industry gig-economy style. Laura lobbies at the federal level to influence change that increases access to care and reduces disparities in telehealth. She shares her story of how she got into Telehealth, her experience serving as an officer in the US Army, her passion for women's health, and much more! Tune in to this week’s episode to learn: How she takes care of her own wellbeing with a busy schedule and many initiatives on the go How telehealth has evolved and what it will look like in the future What the benefits to telehealth are, and any barriers it has  The evolution of healthcare and how telehealth fit into this  How to know if telehealth is right for you vs an in person visit 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

In the first episode from #aids2024, Yvette Raphael and Jeff Sturchio join Ben to highlight the scientific data they are excited about that will be presented this week, and take stock of the panoply of pre-conferences, satellite symposia and press conferences they’ve already been to - and the conference hasn’t even started! https://www.iasociety.org/conferences/aids2024 https://www.unaids.org/en https://www.who.int/news-room/events/detail/2024/07/20/default-calendar/who-at-aids-2024 https://www.state.gov/pepfar-aids-2024 #aids2024 #HIV #diagnostics #treatment #Prevention #PrEP #ARVs #longacting #cabotegravir #lenacapavir #doxy-prep #doxy-pep #choicemanifesto

We’ll be at AIDS2024 podcasting daily, and to give us a primer on what to expect, Ben is joined by infectious disease specialist, Ben LaBrot - on everything from the difference between epidemic control and elimination to how to get prevention and care services to communities hardly reached by conventional clinical services. This podcast is supported by Roche Molecular Diagnostics. https://www.iasociety.org/conferences/aids2024 https://keck.usc.edu https://diagnostics.roche.com/gb/en/home.html https://floatingdoctors.com https://www.unaids.org/en #aids2024 #HIV #AIDS #epidemiccontrol #elimination #marginalisedpopulations #PrEP #treatment #diagnostics

How would you navigate the complication of having your spouse display Dissociative Identity Disorder - previously called Multiple Personality Disorder - alongside symptoms of Alzheimer’s? Today, we delve into the memoir "Don't Forget to Dance" with Marc Alderdice for our June Books & Chit Chat with Aging and Amazing. Marc takes us on a poignant journey through his wife Mary's battle with early-onset Alzheimer's, starting at age 59, and the extraordinary challenges they faced together, including her struggles with dissociative identity disorder. We explore the deeply personal experiences that shaped Marc's narrative, his wife Mary’s determination to do all she could to prepare herself for a dementia diagnosis and how his scientific background influenced their approach to Mary's care. Marc also shares how he embraced the role of a male caregiver in a predominantly female sphere, the importance of self-care, and the insights gained from support groups continuing to meet virtually since Covid. You'll hear about the significance of activities and physical gestures in communicating with nonverbal loved ones, the inspiration behind the book's title, and how Mary, despite her diagnosis, found joy in new hobbies and activities. Join us as we uncover themes of love, resilience, and the relentless pursuit of happiness amidst the trials of Alzheimer's. Quote:  I think our journey is positive and encouraging in the sense that it shows you really can make the best out of a bad situation. The person with Alzheimer's and the loved ones can be as happy as possible. It may take some work, and it may take a little bit to change your mindset for how you approach things, but it certainly worked for us. - Marc Alderdice In this episode, you will:  Understand the unique experiences of the Alzheimer's journeyPrepare yourself emotionally and mentally for the impact of Alzheimer's,Discover strategies to arm yourself with the resilience and coping strategies needed to face the journey ahead.Explore the relationship between dissociative identity disorder and Alzheimer'sDiscover valuable techniques for communicating with nonverbal Alzheimer's patients, fostering deeper connections and understanding. After the Podcast Buy the Book  Listen to Previous Podcast with Marc Find more about Marc Follow Marc on Social Media: LinkedIn Facebook 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 Purchase our new anthology, Poetry for the Dementia Journey

📝Full show notes: https://syngap.fund/n145   2020 COBA GRANT https://keck.usc.edu/news/ksom-researcher-awarded-130000-from-syngap-research-fund-to-study-rare-genetic-disease/  SYNGAP.FUND/IPSC > https://curesyngap1.org/ips-cell-models/   2022 QUADRATO GRANT & 2022/3 PAPER MAY 22 PRE-PRINT: https://www.biorxiv.org/content/10.1101/2022.05.10.491244v1.full  SRF PR: https://www.eurekalert.org/news-releases/1050685   2022 ANDERSON GRANT & 2024 PAPER    Webinar: https://curesyngap1.org/resources/webinars/evaluation-of-a-stem-cell-gene-therapy-approach-for-syngap1/ Announcement: https://www.linkedin.com/posts/curesyngap1_syngap1-srfresearch-stemcelltherapy-activity-7215557722614743041-rxOV  Angelman: https://pubmed.ncbi.nlm.nih.gov/33856035/ Transformatx Biotheraputics LLC: https://cureangelman.org/fast-announces-formation-of-lentiviral-gene-therapy-company MNDU3: https://www.fiercepharma.com/pharma/fda-wants-classwide-boxed-warning-all-commercial-car-t-therapies-amid-secondary-cancer    TAKEAWAY: Focus on the clinic, and let the best therapy win.   CLINICAL NETWORK / NHS UPDATE COLORADO webinar postponed, still register, we will notify you via email of the new date. https://syngap.fund/Abbott    To sign up for the Colorado clinic please contact SRF Ops Manager, Lauren Perry, [email protected].    CALIFORNIA SYNAPTOPATHY CLINIC (CSC) starting to see patients, if you are in CA call them. https://curesyngap1.org/blog/srf-announces-stanford-launches-california-synaptopathy-clinic/   FUNDRAISING Missense Account of the Fund $10k+ https://secure.givelively.org/donate/syngap-research-fund-incorporated/missense-fund Emmy $5k+ https://secure.givelively.org/donate/syngap-research-fund-incorporated/save-emmy-s-future-fund-syngap1-research  YOU? https://curesyngap1.org/blog/fundraising-the-backbone-of-research/   CALENDAR MANAGEMENT Rare Across America is 24 days away, registration ends in 10 days! https://everylifefoundation.org/rare-advocates/rare-across-america/    Conference is 146 days away & Registration is live! https://curesyngap1.org/events/conferences/syngap1-conference-2024/ https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2024-hosted-by-syngap-research-fund-srf    CB Blood Donation accelerates Science! STXBP1 conference (Philadelphia, PA, July 19-21, 2024) Myhre Syndrome conference (Philadelphia, PA, July 27-28, 2024) HNRNPH2 conference (Seattle, WA, July 29-30, 2024) PWS/USP7 conference (Atlanta, GA, September 26-27, 2024) COMBINEDBrain conference (Kansas City, MO, September 29th, 2024) SYNGAP1, SLC6A1, Cure GABA-A Variants conference (Los Angeles, CA, December 4-5, 2024)   NEWLY DIAGNOSED? New families have resources here! https://syngap.fund/Resources SOCIAL MATTERS - AMPLIFY SRF TO MAKE SURE FAMILIES FIND US  - 1,050 YouTube.  https://www.youtube.com/@CureSYNGAP1   - 3,685 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ - 10,724 Twitter https://twitter.com/cureSYNGAP1 - 48k Insta https://www.instagram.com/curesyngap1/ - 415 TikTok https://www.tiktok.com/@curesyngap1 Podcasts, give all of these a five star review! SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917Episode 145 of #Syngap10 - July 11, 2024 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1

Since its ‘birth’ in 1994, Frontline AIDS has worked local communities best placed to carry the shared mission to end AIDS for everyone, everywhere. In this episode, we explore how this unique approach to localization has delivered effective community-led results from Kenya to Ukraine - and ask what the future holds for the partnership.  Panelists: David Clark, Head: Programmes, Frontline AIDS Andriy Klepikov, Executive Director, Alliance for Public Health, Ukraine Dr. Lilian Otiso, LVCT Health  https://frontlineaids.org https://aph.org.ua/en/home https://lvcthealth.org #HIV #AIDS #communities #CBOs #impact #prevention #treatment #humanrights #stigma #ukraine #kenya

Originally aired Nov 2 2021;  Feeling unheard seems to be a common theme nowadays, especially in healthcare. What can you be doing to not only be heard, but to also ensure your patients feel heard? In this week’s solo episode of the Healthcare Provider Happy Hour, I will be discussing what you can be doing as a practitioner to improve this common theme, and avoid any misunderstandings. I share ways you can enhance your communication with not only your patients, but also with your co-workers, to ensure everyone feels heard and acknowledged. Listen to the full episode to learn: Tactics I use in my practice to be present and have open conversations with my patients  How to use communication to avoid misunderstandings  Ways in which you can demonstrate to your patients that they are being heard and acknowledged  What to do when you’re feeling overwhelmed or rushed in a meeting, to ensure your patients still feel valued  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

Norma Herrera nos acompaña desde Argentina. Ella es mamá de Olivia- Olivia tiene 3 años y fue diagnosticada con Syngap1 en Noviembre 2023. Norma es Kinesiologa de profesión, pudiendo así detectar alteraciones en el desarrollo de una niña tan pequeña y siguiendo su instinto maternal nos habla sobre su incesante búsqueda para el diagnóstico correcto de su hija. Nos da una vista rápida de como es el día a día con Olivia y sus necesidades especiales también de cómo enfrenta el diagnóstico de Syngap1 con positivismo de un mejor mañana. 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 16 Café SYNGAP1, Julio 4, 2024 #CafeSYNGAP1 #Syngap #SYNGAP1 #CafeSYNGAP1Olivia #Argentina #epilepsia #epilepsy #epilepsyawareness #autismo #autismawareness #discapacidadintelectual #id #enfermedadesraras #FondodeInvestigacionSYNGAP #SynGAPResearchFund #abogacia #defensadelpaciente #advocacy #patientadvocacy #neurologia #pruebasgeneticas #terapias #familia #apoyo

ONCE UPON A GENE - EPISODE 233 Are You Worried About Your Baby's Development - Enroll in Project FIND-OUT - You May Qualify for Free Whole Genome Sequencing LINKS AND RESOURCES MENTIONED Project Findout https://projectfindout.org/ 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/

📝Full show notes: https://syngap.fund/n144     CENSUS = 1,454  https://curesyngap1.org/how-many-people-have-syngap1-census/ STX version! https://www.stxbp1disorders.org/news/stxbp1-census-q1-2024    FUNDRAISING Missense Account of the Fund https://www.linkedin.com/posts/curesyngap1_syngap1-srd-autism-activity-7213973153071472640-uSYEExplainer - https://www.youtube.com/watch?v=C9bGOA2MFHc  Pipeline - https://curesyngap1.org/syngap1-related-disorder-therapeutic-pipeline/  Emmy  https://secure.givelively.org/donate/syngap-research-fund-incorporated/save-emmy-s-future-fund-syngap1-research  YOU? https://curesyngap1.org/blog/fundraising-the-backbone-of-research/   PHARMA https://www.longboardpharma.com/ http://longboardpharma.gcs-web.com/news-releases/news-release-details/longboard-pharmaceuticals-receives-breakthrough-therapy   CIRM Petition - https://www.linkedin.com/feed/update/urn:li:activity:7210079591275626497  Post - https://www.linkedin.com/posts/nashafitter_rareasone-activity-7212446744511414272-B8qx  Talk - https://david293.substack.com/p/text-of-comments-by-mike-graglia    HOPE - Caring for your SYNGAPian Rainy’s drive - https://curesyngap1.org/blog/my-syngap1-drive-a-thon-hope4thecure/  My visit - https://www.facebook.com/permalink.php?story_fbid=pfbid0SFg2Mx8jxkS8oeStYn5yqEhYgWVAhhQeX8WiSGQqhPcxpTgtyG1TtbaPMBMTAmVGl&id=100088305909698 Keto is powerful, and tricky https://curesyngap1.org/resources/webinars/keto-mad-syngap-parents-experience-syngap1/ Heat is not good - We need a blog here… Adenoids and tonsils are an issue - https://curesyngap1.org/blog/syngap-sleep-you-could-be-one-more-test-away-from-helping-your-syngapian-thrive/    CLINICAL NETWORK / NHS UPDATE COLORADO webinar next week! https://syngap.fund/Abbott July 11, 2024 at 9 Pacific.   CALIFORNIA SYNAPTOPATHY CLINIC (CSC) starting to see patients, if you are in CA call them. https://curesyngap1.org/blog/srf-announces-stanford-launches-california-synaptopathy-clinic/   CALENDAR MANAGEMENT Rare Across America is 34 days away, registration ends in 10 days! https://everylifefoundation.org/rare-advocates/rare-across-america/    Conference is 156 days away & Registration is live! https://curesyngap1.org/events/conferences/syngap1-conference-2024/ https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2024-hosted-by-syngap-research-fund-srf    SHOUTOUTS JACKIE NEW ED OF NCSA https://www.ncsautism.org/blog/ed Jess, Zoe, Lauren, Ed, Suzanne, Heather, Corey…    CB Blood Donation accelerates Science! STXBP1 conference (Philadelphia, PA, July 19-21, 2024) Myhre Syndrome conference (Philadelphia, PA, July 27-28, 2024) HNRNPH2 conference (Seattle, WA, July 29-30, 2024) PWS/USP7 conference (Atlanta, GA, September 26-27, 2024) COMBINEDBrain conference (Kansas City, MO, September 29th, 2024) SYNGAP1, SLC6A1, Cure GABA-A Variants conference (Los Angeles, CA, December 4-5, 2024)   NEWLY DIAGNOSED? New families have resources here! https://syngap.fund/Resources SOCIAL MATTERS - AMPLIFY SRF TO MAKE SURE FAMILIES FIND US  - 1,040 YouTube.  https://www.youtube.com/@CureSYNGAP1   - 3,660 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ - 10,659 Twitter https://twitter.com/cureSYNGAP1 - 48k Insta https://www.instagram.com/curesyngap1/ - 415 TikTok https://www.tiktok.com/@curesyngap1 Podcasts, give all of these a five star review! SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917Episode 144 of #Syngap10 - July 2, 2024 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1

Welcome back to the podcast where we share the powerful stories of those who have been impacted by Alzheimer's and dementia. In this episode, Christy and Marianne sit down with Sue Fagalde Lick, a remarkable poet, author, musician, and dog lover from the Oregon coast. Sue shares her deeply moving story of caring for her husband, Fred, throughout their Alzheimer’s journey until his passing. We dive into Sue's earlier work, Childless by Marriage, and explore her latest writings on widowhood and life after dementia, including her poetry anthologies and newly published memoir,  No Way Out of This: Loving a Partner with Alzheimer’s, which beautifully intertwines the romance and challenges of life with Fred. Sue opens up about the support she unexpectedly received from friends, the therapeutic value of writing, and the importance of maintaining agency and preparedness as a caregiver. Sue's candor about the hardships of caregiving in a rural area, the emotional impact of rehoming pets, and the solace she finds in music and community will resonate deeply with listeners.  We also discuss the creation of our new anthology, Poetry for the Dementia Journey, for which Sue volunteered to serve as editor and formatter.  Join us for a heartfelt conversation that highlights resilience, love, and the importance of support systems in the caregiving journey. Key Takeaways Living Through Dementia TwiceCoping with a Spouse’s Alzheimer'sEmbracing the Caregiver RoleThe Difficulties of Relocating for Medical CareThe Healing Power of Writing The Role of Pets in Caregiving and Therapy Learn more about Sue at AlzAuthors.com Connect with Sue Website Blog Facebook author page Twitter Can I do It Alone? on Substack Purchase Sue’s books No Way Out of This Gravel Road Ahead Childless by Marriage Blue Chip Stamp Guitar Dining Alfresco with My Dog About the Hosts Marianne Sciucco Christy Byrne Yates 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 Purchase our new anthology, Poetry for the Dementia Journey

Originally aired Oct 26th 2021; In this week’s episode, I am joined by Randy Cook, MD, FACS, a respected clinician, educator, podcast host, and executive physician coach. After more than four decades of bedside practice as a general and vascular surgeon, as well as many years of clinical, managerial, and leadership experience, Randy shares invaluable insight into the practice of medicine. We discuss Randy’s journey to healthcare and career pivots he has made to becoming a physician coach and podcast host of Rx for Success.  Randy and the rest of the team at MD Coaches know the unique challenges that physicians face, and provide guidance and support through this rewarding, but often difficult calling. Through his empowering approach, Randy aims to empower physicians, provide tools for growth, and put them on a track to advancement. He is also the host of Rx for Success, a popular podcast that highlights physician leaders and shares their stories of both struggle and success.  Randy began his career as a general and vascular surgeon, and has also succeeded in multiple practice settings from solo practitioner to small single specialty group to large multispecialty clinic. As a clinical educator, Randy's expertise was highly-sought after within the wound care industry, serving as Chairman of the Education Committee for the Wound Healing Society. Randy was a member of the Physician Exam Committee for the American Board of Wound Management where he developed examination criteria that established the standard for national certification. His efforts in this area helped mold a generation of medical care providers. Tune in to this week’s episode to learn: The most important point in Randy’s healthcare education that wasn’t through academics Changes occurring in the healthcare landscape and why there has been an increase in career pivots What you can do if you are feeling dissatisfied in your work as a physician  The comparisons of being in private practice versus being employed  How he became a physician coach & podcast host 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 MD Coaches: https://mymdcoaches.com/  Rx for Success Podcast: https://rxforsuccesspodcast.com/  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 

📝Full show notes: https://syngap.fund/n143     BIO WAS GREAThttps://www.linkedin.com/posts/nashafitter_bio2024-activity-7204906035000582145-Meyp  GRANTS APPROVED Multiple grants and agreements approved, wait for press releases.  Thank you Aaron & Sarah, Lauren!FUNDRAISING  - Great work to MDBR - Almost $45k, that will be added to $30k! https://charity.pledgeit.org/t/jY577u7uMc Awesome Peter, Heather, Aaron, Justin Albrect & Kali Worth.  Also Dr Jillian McKee!  - Blane & Ashley Dallen in Canada raised almost $15k via a tournament.   NHS UPDATE Colorado should start seeing patients in August!  Don’t cancel CHOP appointments, some people have no choice.   CHATS WITH INDUSTRY Prevalence:  They are easily missed.  The math is clear.  Lots of data.  1% of ID = 35k+ 1/100k at 3.6m in 2023 = 36 a year, minimum with PTV. 5/100k = 180. A YEAR. Caren is 65. 36 x 65 = 2,340 PTVs vs 400 SRF knows about) https://curesyngap1.org/blog/why-are-we-so-sure-that-syngap1-related-intellectual-disability-is-under-diagnosed/   CALENDAR MANAGEMENT Rare Across America is 28 days away, register now: https://everylifefoundation.org/rare-advocates/rare-across-america/    Conference is 170 days away & Registration is live! https://curesyngap1.org/events/conferences/syngap1-conference-2024/ https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2024-hosted-by-syngap-research-fund-srf    CB Blood Donation accelerates Science! STXBP1 conference (Philadelphia, PA, July 19-21, 2024) Myhre Syndrome conference (Philadelphia, PA, July 27-28, 2024) HNRNPH2 conference (Seattle, WA, July 29-30, 2024) PWS/USP7 conference (Atlanta, GA, September 26-27, 2024) COMBINEDBrain conference (Kansas City, MO, September 29th, 2024) SYNGAP1, SLC6A1, Cure GABA-A Variants conference (Los Angeles, CA, December 4-5, 2024)   SHOUTOUTS  - Zoe https://curesyngap1.org/blog/parents-take-action-after-syngap1-related-disorder-diagnosis/  - We need a Pavel award.   NEWLY DIAGNOSED? New families have resources here! https://syngap.fund/Resources SOCIAL MATTERS - AMPLIFY SRF TO MAKE SURE FAMILIES FIND US  - 1,030 YouTube.  https://www.youtube.com/@CureSYNGAP1   - 10,421 Twitter https://twitter.com/cureSYNGAP1  - 3,652 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ - 49k Insta https://www.instagram.com/curesyngap1/ - 397 TikTok https://www.tiktok.com/@curesyngap1 Podcasts, give all of these a five star review! SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917Episode 143 of #Syngap10 - June 18, 2024 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1

This podcast is a replay of our recent panel discussion on LGBTQ+ caregiver concerns, hosted by Sue Evans of Kensington Senior Living and AlzAuthors. Authors Laura Davis, Christopher MacLellan, Vincent Zappacosta, and Douglass Christensen joined Sue, Christy and I as we delved into the complexities of caregiving within the LGBTQ+ community. They shared personal stories, insightful advice, and meaningful discussions about their caregiving journeys, offering knowledge and support to others currently caring for a loved one. Empathy emerged as a recurring theme during the discussion. The group explored how understanding and compassion are foundational to a positive caregiving experience, especially in the face of stigmas surrounding dementia and LGBTQ+ identities. The panelists underscored the critical importance of legal documents such as power of attorney and healthcare proxies. These tools grant caregivers the authority needed to make vital decisions during emergencies. The LGBTQ+ community, in particular, benefits from these preparations to navigate potential biases and ensure their loved ones’ wishes are honored. They emphasized that preparing documents and passwords in advance can prevent needless complications, resonating with caregivers who might find themselves thrust into unexpected situations. The episode illuminated unique challenges faced by LGBTQ+ caregivers. Issues such as isolation and the need to select healthcare providers comfortable with their orientation were discussed candidly. Positive experiences in inclusive areas like California and New York City contrasted with occasional instances of discrimination, as shared by Vincent and Douglas when they faced resistance in having Douglass recognized as family. Legal tools and personal anecdotes underscored the power of preparedness in overcoming personal bigotry and ensuring smooth caregiving and end-of-life processes. The insights from this episode of the AlzAuthors podcast offer hope and guidance for caregivers, especially those navigating the additional layers of complexity tied to LGBTQ+ identities. About the Authors Laura Davis, The Burning Light of Two Stars Christopher MacLellan, What's the Deal with Caregiving? Vincent Zappacosta and Douglass Christensen, Dementia-Mama-Drama About the Moderators Marianne Sciucco, Blue Hydrangeas, an Alzheimer's love story Christy Byrne Yates, Building a Legacy of Love: Thriving in the Sandwich Generation Kensington Senior Living 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 Purchase our new anthology, Poetry for the Dementia Journey