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📝Full show notes: https://syngap.fund/n147    FDA Talk this week!  Thank you Beacon! https://syngap.fund/fda24      SRF ADVOCACY - Don’t miss the chance to beef up your advocate muscles, after we get through FDA, the fun has just begun.  JK & JJ are amazing.  https://curesyngap1.org/team/leadership-team/jackie-kancir/    ADULT ADVOCACY SRF & UBC: https://curesyngap1.org/adults-with-syngap1-caregiver-resources/ also /Adult Interview: https://www.youtube.com/watch?v=JDiD8Z3lWQkFoundation: https://colinfarrellfoundation.org/ WaPo Article: https://www.washingtonpost.com/health/2024/08/08/what-is-angelman-syndrome-colin-farrell-son/   LEVERAGE PARTNERS https://globalgenes.org/blog/global-genes-sweet-16th-birthday-success-stories/ Go to GG Rare Advocacy Summit Sept 26 & 27. https://globalgenes.org/week-in-rare/   SCIENCE TEAM PROJECT ACES - Accelerating Clinical Excellence for SRD - CHCO & Data PROJECT SBOM - SYNGAP1 Biomarker & Outcome Measures - Analysis PROJECT SMART - SYNGAP1 Missense Analysis Research & Therapeutics - In flight PROJECT PURPOSE - Repurposing - Ravicti, NAL, Nortriptyline - Unravel PROJECT FACILITATE - Tools and Reagents - Mice work in flight   RESEARCH UPDATE There are 292 papers on or related to SYNGAP1 since 1998, but 32 of those are in 2024!  We are more than on track to set a record this year with the biggest annual output being in 2023 with 43 papers.  I’ve seen multiple papers being submitted lately, it’a actually hard to keep up.   LINK   LATEST PAPER: https://www.eurekalert.org/news-releases/1053579 WEBINAR: https://curesyngap1.org/resources/webinars/73-linking-syngap1-with-human-specific-mechanisms-of-neuronal-development/   FUNDRAISERS! Go Australia! https://www.theland.com.au/story/8704556/support-syngap1-research-win-a-toyota-hilux-sr5/  3 state advocates on website & 17 ambassadors with more coming - still need volunteers for many states! Contact Jackie (Adv) or Corey (Amb)   Smarts for Syngap - DC Trivia Night - 24 Days!   Scramble for Syngap - 55 days! - October 5, Greer, South Carolina https://curesyngap1.org/events/fundraisers/scramble-for-syngap-2024/   SynGAP Research Fund Gala - 68 days! - October 18, Farmingdale, NJ https://curesyngap1.org/events/fundraisers/srf-gala-honoring-caren-leib/   Missense Account of the Fund $21,684 https://secure.givelively.org/donate/syngap-research-fund-incorporated/missense-fund Emmy $6,449 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 Conference is 116 days away, WE HAVE A ROOMBLOCK & 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  Conference Registration - 44 for Science Day (36 caregivers) & 52 for Family Day (36 caregivers, 13 kids/sibs)   CB Blood Donation accelerates Science!  These samples are being used today! 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) https://curesyngap1.org/resources/studies/combinedbrain-biorepository-roadshow-2024   SOCIAL MATTERS - AMPLIFY SRF TO MAKE SURE FAMILIES FIND US  - 1,070 YouTube.  https://www.youtube.com/@CureSYNGAP1   - 3,713 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ - 11,168 Twitter https://twitter.com/cureSYNGAP1 - 48k Insta https://www.instagram.com/curesyngap1/ - 418 TikTok https://www.tiktok.com/@curesyngap1   NEWLY DIAGNOSED? New families have resources here! https://syngap.fund/Resources    Podcasts, give all of these a five star review! SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917   Cafe Syngap1 #17 https://podcasts.

Host Justin Barnes invites back John Lynn, Founder of Healthcare IT Today and Swaay Health to catch up on their long time friendship in the industry. They discuss John's 3 macro trends of the industry, AI Everything, Security, and Workforce.

In this episode of Beyond the Paper Gown, Dr. Mitzi Krockover engages in a vital conversation with Dr. Jessi Gold, a psychiatrist and the inaugural Chief Wellness Officer of the University of Tennessee system. Dr. Gold shares insights from her new book, "How Do You Feel?" and discusses the pervasive issue of burnout among healthcare workers, the impact of the COVID-19 pandemic, and the importance of mental health awareness. Listeners will gain valuable perspectives on recognizing and addressing burnout, the role of self-care, and how to support mental well-being in themselves and others. Tune in for practical advice from a doctor that experienced her struggles with burnout.  Please visit Beyond the Paper Gown to join our community and to learn more about achieving your optimal health. SHOW NOTES: Pre-Order “How Do You Feel” This title will be released on October 8, 2024  CDC Mental Health, Support for Public Health Workers and Health Professionals The Schwartz Center, Mental Health and Well-Being Resources for Healthcare Workers NAMI, Health Care Professionals

"Academia is a great area and fosters innovation, but then taking that science and translating it into something that can actually impact human health has a number of challenges. So trying to understand what those barriers are and how we can help bridge them is something that we have been able to do at ADDF and in collaboration with StartUp Health." In this episode of StartUp Health NOW, we chat with Laura Nisenbaum, PhD, Executive Director of Drug Development at the Alzheimer's Drug Discovery Foundation (ADDF). Organizations like ADDF are working to translate scientific research into real patient impact, particularly in the field of Alzheimer's disease, by funding innovative ventures and supporting startups in the biotech space. Dr. Nisenbaum talks with us about new Alzheimer’s tests and therapeutics and pulls back the curtain on how ADDF supports startups. Key Insights: We are at a tipping point in Alzheimer’s. Our ability to predict and detect – and then treat – Alzheimer’s disease is growing faster than ever. Dr. Laura Nisenbaum was involved in the launch of StartUp Health's Alzheimer's Moonshot, a collaboration with The Gates Foundation and ADDF, which is important for advancing research in the field of Alzheimer's disease. Academia fosters innovation, but translating scientific work into real patient impact poses challenges that need to be understood and bridged. Venture philanthropy model enables funding for innovators who may not receive funding from for-profit companies, allowing for more risky endeavors. The Diagnostics Accelerator challenges the research community to develop cutting-edge biomarkers and explore novel diagnostic technologies that will aid in Alzheimer’s diagnosis and clinical trial design. The potential for AI to revolutionize Alzheimer's research and diagnosis is evident in the funding and support for innovative companies in the field. Focusing on the biology of aging, including inflammation and mitochondrial dysfunction, could be key in developing novel therapies for Alzheimer's disease. The field of Alzheimer's research and care is at an amazing point with the first demonstration of some efficacy for drugs and a huge innovation curve from a biomarkers and diagnostics perspective. We can now detect amyloid in the brain through blood tests, marking an amazing point of innovation in the field of Alzheimer's research. Pursue innovative ideas with great gusto and perseverance, and take advantage of the incredible network of mentors and collaborators to thrive in the biotech and startup space. The momentum is building in the field of Alzheimer's research, thanks to the support from organizations like ADDF.

In this episode of the Women Physicians Lead podcast, Dr. Lisa discusses "the power of persuasion and influence" for women physician leaders. She emphasizes that influence is crucial for effective leadership, focusing on guiding and inspiring others rather than controlling them. Dr. Lisa addresses challenges like gender biases and self-doubt and offers strategies to build influence, such as developing expertise, effective communication, building relationships, leading by example, and understanding team dynamics. The episode underscores the importance of influence in driving meaningful change in healthcare and encourages women leaders to harness this skill. If you want to discover your purpose, set your career goals, and prepare for the next best leadership role look no further. I am offering for a limited time my Career Reinvention Audit Session designed to provide you with a 30-day roadmap for reinventing your career and thriving as a leader click here. I look forward to working with you!

Recognizing the front-line healthcare professionals’ contributions fosters a culture of innovation and problem-solving within healthcare organizations. In this episode, Ann Louise Puopolo, Chair of the Customer Advisory Board at RLDatix, shares insightful thoughts on the challenges facing healthcare staffing and how technology can revolutionize patient care.  She highlights the pivotal role of nurses and the need to optimize their usage to ensure better outcomes for both patients and healthcare providers. Throughout this interview, Ann Louise delves into the significance of leveraging data and analytics to optimize workforce utilization. She also discusses the potential impact of digital transformation on healthcare delivery.  Don't miss this episode, as Ann Louise offers valuable insights to shape the future of healthcare delivery! Resources: Connect with and follow Ann Louise on LinkedIn. Follow RLDatix on LinkedIn and visit their website. Reach out to Ann at [email protected]

Send us a Text Message.Presidential candidate Kamala Harris has positioned herself as a strong advocate for female reproductive rights and progressive policies.As she seeks to distinguish herself from the former president, does her stance on broader healthcare issues change as well?In this episode of CareTalk, David E. Williams and John Driscoll explore presidential hopeful Kamala Harris' views and potential future policies on everything from reproductive freedom to drug pricing and access to care.This episode is brought to you by BetterHelp. Give online therapy a try at https://betterhelp.com/caretalk  and get on your way to being your best self.As a BetterHelp affiliate, we may receive compensation from BetterHelp if you purchase products or services through the links provided.TOPICS(0:23) BetterHelp Sponsorship(1:30) Why Kamala Harris Matters for Healthcare(2:10) Understanding Kamala's Role in Healthcare as VP(3:04) The Impacts of Overturning Roe vs. Wade(4:29) Looking at the Rights Associated with Reproductive Freedoms(5:10) Women's Views on Abortion Access(6:46) Looking at Harris' Wider Healthcare Policy(7:39) The Problems with Prenatal Care in the U.S(10:17) How Harris Will Tackle Discrimination in Healthcare(11:46) Grappling with Pharmaceutical Pricing(13:02) What will Harris' Impact be on Medicare and Healthcare Mergers?(14:38) How J.D. Vance Contrasts with Kamala Harris on Healthcare Policy(17:26) Will Kamala Harris Implement Universal Healthcare?(19:36) Will Harris' Stances on Healthcare Have an Impact on Her Electability?🎙️⚕️ABOUT CARETALKCareTalk is a weekly podcast that provides an incisive, no B.S. view of the US healthcare industry. Join co-hosts John Driscoll (President U.S. Healthcare and EVP, Walgreens Boots Alliance) and David Williams (President, Health Business Group) as they debate the latest in US healthcare news, business and policy. GET IN TOUCHBecome a CareTalk sponsorGuest appearance requestsVisit us on the webSubscribe to the CareTalk NewsletterShop official CareTalk merchFOLLOW CARETALKSpotifyApple Podcasts#healthcarepodcast #healthcare #KamalaHarris #reproductiverights #accesstocare #pharma #drugpricesSupport the Show.CareTalk: Healthcare. Unfiltered. is produced by Grippi Media.

Coaching can be highly beneficial for leaders in transition, helping them navigate new roles and challenges with a clear goal in mind. In this episode, Saul Marquez interviews Dr. Mike Horne, a seasoned HR and organizational development leader, who discusses his approach to coaching, emphasizing the importance of understanding oneself, trusting others, and having clear goals. He recounts his experiences with leaders and organizations, highlighting the value of listening, respect, and continuous development. Dr. Horne emphasizes the importance of knowing yourself, including your biases and values, to become an effective leader. He also explains why successful people often seek continuous improvement and benefit from having someone to challenge their assumptions. Tune in and learn how to elevate your leadership skills and organizational effectiveness with practical tips and expert advice from Dr. Mike Horne! Resources:  Watch the entire interview here. Connect and follow Dr. Mike Horne on LinkedIn. Learn more about Mike and his services on his website. Buy Mike Horne’s book, Integrity by Design, here. Listen to Mike’s podcast, The People Dividend Podcast, here.

On episode 486 of The Nurse Keith Show nursing and healthcare career podcast, Keith interviews Matt Hollingsworth, the co-founder of Carta Healthcare, a company dedicated to creating a healthier future by advancing the technology surrounding data practices in healthcare. In the course of their conversation, Keith and Matt discuss the rising importance of artificial intelligence in the healthcare space and how the strategic use of AI can benefit doctors, nurses, and patients in a variety of ways, including data abstraction for improving quality of care and patient outcomes. Matt also shares strategies for how nurses can position themselves for career growth and marketability when it comes to the intersection of AI, medicine, and nursing. Matt's passion for improving patient care developed while helping his mother, a five-time cancer survivor, navigate the U.S. healthcare system and communicate her conditions to providers. In 2017, Matt founded Carta Healthcare, which is a leader in delivering improved data gathering solutions to healthcare systems related to a patient's diagnosis, treatment, and outcomes. Carta Healthcare’s solutions have revolutionized the processes surrounding registry databases, resulting in markedly faster data collection, superior quality of data, and considerable cost savings for healthcare providers. Matt holds an MBA from Stanford University, where he also worked in the Systems Utilization Research for Stanford Medicine (SURF Stanford Medicine) lab, researching methods for using information technology to reduce equipment waste and improve patient care. It was through his work at Stanford that he and colleagues founded Carta Healthcare. Before receiving his MBA and founding Carta Healthcare, he was a researcher at CERN (Conseil Européen pour la Recherche Nucléaire) and a member of the team that discovered the Higgs boson, an important discovery in particle physics. Matt received bachelor’s and master’s degrees in physics from the University of Tennessee, Knoxville. Connect with Matt Hollingsworth and Carta Healthcare: Carta Healthcare company website Facebook Instagram X LinkedIn Contact Nurse Keith about holistic career coaching to elevate your nursing and healthcare career at NurseKeith.com. Keith also offers services as a motivational and keynote speaker and freelance nurse writer. You can always find Keith on LinkedIn. Are you looking for a novel way to empower your career and move forward in life? Keith's wife, Shada McKenzie, is a gifted astrologer and reader of the tarot who combines ancient and modern techniques to provide valuable insights into your motivations, aspirations, and life trajectory, and she offers listeners of The Nurse Keith Show a 10% discount on their first consultation. Contact Shada at TheCircelandtheDot.com or [email protected].

Acceder a información sobre enfermedades raras es complicado-- y la falta de datos adecuados dificulta las decisiones sobre tratamientos y servicios para los pacientes. Algunas enfermedades raras comparten síntomas con otras, como Syngap1. En este capitulo de Café Syngap1, invitamos a la neurólogo-pediatra, Dra. Jisbelys Salazar. Aquí ella resalta la importancia de la detección temprana, el trabajo comunitario, como mantenerse informado y aumentar la concienciación para mejorar los diagnósticos. 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 17 Café SYNGAP1, Agosto 8, 2024 #CafeSYNGAP1 #Syngap #SYNGAP1 #CafeSYNGAP1 #DoctoraJisbelysSalazar #neurologia #pediatria #epilepsia #epilepsy #epilepsyawareness #autismo #autismawareness #discapacidadintelectual #id #enfermedadesraras #FondodeInvestigacionSYNGAP #SynGAPResearchFund #abogacia #defensadelpaciente #advocacy #patientadvocacy #neurologia #pruebasgeneticas #terapias #familia #apoyo

Host Jeremy Quinby has a conversation with Kelsey Reardon, a pediatric nurse and integrative medicine practitioner here in the Twin Cities of Minneapolis and St. Paul Minnesota. Having worked as a school nurse and as an in patient and out patient provider, she’s recently branched out this past year to create her own clinic setting where she’s finding more freedom to hone her skillset incorporating more holistic pediatric care modalities, including Chinese medicine and acupressure, pediatric massage, aromatherapy, yoga, reiki and most importantly, education.  As they discuss here, it’s incredibly important to continue to build a modal for a more integrative approach to care where individuals and families are able to be exposed to new tools that can address challenges as they come up and prevent them from ever becoming chronic conditions.  So many great considerations in this conversation for both parents and practitioners of care.  https://fourpillarspeds.com/

In this episode of Talking HealthTech, we speak with Tim Boyle, CEO of ARCS Australia; Annree Wogan, Co-founder of ADORA Coaching & Leadership; Nick Northcott, Founder of Chrysalis Advisory; Guy Tsafnat, Founder of Evidentli; Stefan Mazy, CEO of DermR Health Solutions; and Matt Dun, Professor of Paediatric Haematology and Oncology Research at the University of Newcastle and Hunter Medical Research Institute. This episode was recorded at the ARCS Annual Conference 2024 and explored various topics such as leadership development, the convergence of medical technologies, data harmonisation using AI, innovative healthcare solutions, patient engagement, and the professional growth of the medtech and pharmaceutical sectors.Key TakeawaysLeadership Development and Team Performance: The significance of developing leadership and collaboration skills within executive teams is discussed, focusing on the Maximising Team Performance framework.Innovative Medical Devices: Insights are shared into developing a next-generation hydrogel condom and the stringent quality and manufacturing standards involved.Data Integration and AI: Evidentli’s approach to using AI for cleaning and harmonising real-world health data enhances precision and integration in healthcare applications.Healthcare Advancements: A new method for skin cancer testing is introduced, which reduces unnecessary biopsies and costs by utilising micro-needle structures and gene assays.Patient Engagement and Data-Driven Research: The importance of embedding patient and family perspectives in drug development to improve outcomes and integrate research efforts is emphasised.ARCS Transformation and Industry Support: ARCS Australia has evolved into a professional association supporting the broader medtech and pharmaceutical sectors by providing networking and learning opportunities.Check out the episode and full show notes on the Talking HealthTech website. We also recorded many more interviews during ARCS 2024 and can’t include them all in this episode, so head over to our YouTube channel to catch the rest!Loving the show? Leave us a review, and share it with someone who might get some value from it.Keen to take your healthtech to the next level? Become a THT+ Member for access to our online community forum, meet ups, special offers and more exclusive content. For more information visit talkinghealthtech.com/thtplus

  Alec Peterson, MD, Chief Medical Officer of Acute and Specialty Care at Devoted Health, joins Eric to explore the innovative care delivery model that sets Devoted Health apart from other Medicare Advantage plans. Devoted Health uniquely integrates healthcare coverage with its in-house, virtual, and in-home care provider, Devoted Medical, in partnership with leading healthcare providers to offer comprehensive care for older Americans.   Alec shares the key strategies behind Devoted Health’s impressive success and delves into how Devoted Medical’s groundbreaking model has driven high member satisfaction and improved clinical outcomes. He also unveils the roadmap for achieving a 5-star rating from CMS for their Medicare Advantage plans in Florida and Ohio. About Alec Alec Petersen, MD, is an internal medicine physician and Chief Medical Officer, Acute & Specialty Care with the Devoted Medical team of Devoted Health. In his role, Petersen leads Devoted Health’s Care on Demand program and focuses on maximizing the potential of innovative at-home care delivery without overstressing an already maxed-out healthcare workforce.   After receiving his medical degree from Vanderbilt University School of Medicine, Alec completed a clinical fellowship and MBA at Harvard. Before his career in medicine, he served as a military intelligence officer.    About Devoted Health Founded in 2017 by brothers Todd and Ed Park, Devoted Health is a new kind of healthcare company providing all-in-one care for older Americans. Members of the company’s best-in-class insurance plans can receive care through their trusted PCP and complementary preventative care services through Devoted Medical, the first virtual and in-home medical group built from the ground up to serve the specific needs of the Medicare population. The Devoted Medical team of mission-oriented clinicians works closely with members’ primary care physicians and Devoted’s full-service Guides to deliver a new model of advanced primary care, powered by deeply specialized clinical programs and proprietary technology that enables intensive care coordination.

Discover the importance of an end-to-end platform that simplifies the pre-treatment workflow and ensures collaborative care between dental and medical experts. In this episode, Alice Limkakeng shares her insights on transitioning to digital workflows, streamlining patient experiences, and the pivotal role of technology in bridging the gap between medicine and dentistry. She also discusses the challenges and opportunities for dental professionals entering this field and how her platform is designed to simplify and optimize care from end-to-end. Sit back and join us for a compelling conversation with Alice Limkakeng. Resources: Connect with and follow Alice Limkakeng on LinkedIn. Follow SleepArchitects on LinkedIn and explore their website! Email Alice here and call her at (914) 341-2468 or their team’s number: (888) 777-3198 Watch the entire episode on YouTube and get more details at Think Oral Health.