#S10e96 - https://www.youtube.com/watch?v=MkCKK4Z7J2I
Rochester - Check. I asked in #S10e132 to do this and you stepped up, thank you. We hit 200!
Aparito time Fill this in: https://forms.gle/4EsW3wu8BG4TQrD7A
The intersection of biomarkers and repurposing: The latter could help us figure out which of the former to focus on which could be the difference between a drug making it.
Friend message - “And I wanted to tell you about the worsening behavior with treatments: a friend of mine has a son with Dravet syndrome, and many years ago they started him on a drug that reduced the seizures quite a bit, and my friend used to say “with this new treatment cleaning his brain from all those EEG interferences, we are starting to see more of his personality… and we’ve realized that we don’t like him”. Very harsh but very real to say”
Morning Video SM vs ASO vs AAV https://www.youtube.com/watch?v=-xp3kTsBz38
List of repurposed drugs:
Ravicti® (glycerol phenylbutyrate) - https://www.youtube.com/watch?v=Rwwdifsu1g8
Butyrate - https://www.youtube.com/watch?v=hjl9Z5_uQws
NAL - https://www.youtube.com/watch?v=TphYC3o2BJQ
Pamelor® (nortriptyline) - https://www.youtube.com/watch?v=z0BdjDaWiMs
Fycompa® (perampanel) - Need to have a webinar on this.
Fycompa ® story from middle market country, Fycompa + Depakine + Risperadone. Wow.
Ethics. Is it ethical to sit back and let our kids suffer?
Thank you to Virginie who is helping with EEG grant and volunteers, we have her back from ciitizen! Thank you to those working on CZI grant too!
Congratulations to Encarnation and the SYNGAP1 European Team for this coverage https://english.elpais.com/health/2024-02-12/unraveling-the-mystery-of-celias-inexplicable-disease.html
Syngap1Stories Episode 26 guest Paulina Polanco - released 2/13. Includes her Family Day talk in Orlando. Syngap.Fund/Stories
Cafe Syngap1 Episode 11 guest Claudio Diaz - released 2/17 Syngap.Fund/Cafe
Get Ready for Sprint - save the date 4/27/24 - sign up your teams now; Rifton is giving away another adaptive tricycle to a team who raises >$500 - Syngap.Fund/Sprint24 https://www.rifton.com/ (9 teams signed up as of 2/23 - we had 28 teams in 2023;)
Orlando Family Day VideosUploaded to YouTube (https://www.youtube.com/playlist?list=PLjpr3a14_ls3PKu4oB_aeU_tfyYLE6-jj)
Added to Paulina’s blog recap of the day (https://curesyngap1.org/blog/syngap1-family-day-2023-a-beacon-of-hope/);
Videos include Science Day Recap as well as a separate video of Mike’s recap on “Where are we now?”, a summary of how parents can prepare for what’s coming in the next couple of years (https://youtu.be/-xp3kTsBz38?si=_qHKRsYz2uJDJR_F).
SYNGAP1 Conference 2024 hosted by SRF - planning committee will start meeting soon; if interested in helping, contact [email protected]
SYNGAP1 Sibling Shanaye, a High School senior, is using her platform as the 2023 Hodgeman County Miss Teen Pageant winner to spread the word about SYNGAP1, which affects her younger sister Addison.YouTube Video - https://youtu.be/4L32aPNMSeM?si=EqNEhROdzvfGZxEQ
Addison’s Warrior Story - https://curesyngap1.org/syngap-warriors/addison/
We teamed with Simons Searchlight for their annual Shine Your Searchlight Campaign - if you’re not signed up with Simons yet, sign up now - https://www.simonssearchlight.org/
Sydney & Sandy in S. Africa for Rare-X Rare Disease Conference - https://x.com/sandysmith317/status/1757669120928047520?s=20
We’re looking for state representatives and state advocates - fill out this form if you’re interested - https://docs.google.com/forms/d/e/1FAIpQLSfPWiyvAPuKif-h2bbMBqUKVLMeOeK-ISehbM9PvnReXMRjZg/viewformState Representatives - provide a point of contact for SYNGAP1 families (especially newly diagnosed) in your state to assist with information about registries, studies, fundraising, and other resources
State Advocates - help families in your state navigate difficult systems (education, h
February 24, 2024
Morine Cebert, PhD, APRN, is an accomplished nurse scholar specializing in reproductive endocrinology (infertility) disparities and inequities. With over a decade of experience in clinical care and research, Dr. Cebert has acquired extensive expertise in fertility and family planning. She has received top-tier training from prestigious institutions which include Boston College, Winston-Salem State University, Duke University, and the University of Pennsylvania.
Through her research involving diverse patient populations and healthcare providers, Dr. Cebert identified a common lack of knowledge among all groups regarding incorporating planning to prevent fertility challenges or accessing care to address unique reproductive issues.
Driven by an unwavering passion for equitable family building for all aspiring parents, Dr. Cebert founded Fertility Goal, LLC in 2023. The mission of Fertility Goals, LLC is to offer affordable and impactful solutions to enhance the experiences of family building for individuals, families, and professional organizations. The first of many products offered by Fertility Goals is the Fertility Goals conversational card deck, a low-cost solution to discuss and define family building goals for all.
Connect with Morine on:
Join the conversation by sending comments or questions to [email protected]
1. Subscribe to the Nurse Wellness Podcast
2. Download your FREE resource 3 Questions to Ask When You're Stressed
3. Join the Wellness Hub for Stress Solutions community
4. Email Nurse Wellness Podcast at [email protected]
Intro and outro music produced by DNMbeats
February 24, 2024
Join Francisco M. Torres, an interventional physiatrist. As the author of Dr. T’s Drop the Fat Diet: 12 Steps to Leaner You Forever, Dr. Torres shares invaluable findings from recent clinical studies, revealing which diets truly enhance longevity. Discover the secrets behind his three-stage eating plan designed for rapid weight loss and sustained health optimization. Francisco M. Torres is an interventional physiatrist specializing in diagnosing and treating patients with spine-related pain syndromes. He is certified by the American Board of Physical Medicine and Rehabilitation and the American Board of Pain Medicine and can be reached at Florida Spine Institute and Wellness. He discusses his book, Dr. T’s Drop the Fat Diet: 12 Steps to Leaner You Forever. Our presenting sponsor is Nuance, a Microsoft company. Together, Microsoft and Nuance are leveraging their rich digital technology and advanced AI capabilities to tackle some of health care's biggest challenges. AI-driven technology promises to revolutionize patient and provider experiences with clinical documentation that writes itself. The Nuance Dragon Ambient eXperience, or DAX for short, is a voice-enabled solution that automatically captures patient encounters securely and accurately at the point of care. DAX Copilot combines proven conversational and ambient AI with the most advanced generative AI in a mobile application that integrates directly with your existing workflows. Physicians who use DAX have reported a 50 percent decrease in documentation time and a 70 percent reduction in feelings of burnout, and 85 percent of patients say their physician is more personable and conversational. Discover AI-powered clinical documentation that writes itself. Visit https://nuance.com/daxinaction to see a 12-minute DAX Copilot demo. VISIT SPONSOR → https://nuance.com/daxinaction SUBSCRIBE TO THE PODCAST → https://www.kevinmd.com/podcast RECOMMENDED BY KEVINMD → https://www.kevinmd.com/recommended GET CME FOR THIS EPISODE → https://earnc.me/4SXtkA Powered by CMEfy.
February 24, 2024
Because of the nature of the work we do at StartUp Health, we’re often dealing with bleeding-edge ideas and technologies. Just last week on the show we talked to a founder creating what could be the smallest implantable devices on the market. Others are working on molecules that could cure diseases.
But there’s another kind of innovation that we’re equally passionate about at StartUp Health. That’s the kind of business model innovation that brings the best care and technology already available to new places and new people. There are many vulnerable communities that don’t get to benefit from the latest technical advances and it takes creative founders to bridge the gap.
Today on the podcast we’re highlighting two such founders. The first is Shruti Gurudanti, the CEO & Co-founder of Televëda – a member of the StartUp Health community since 2021. Gurudanti and her team are working with Native American veterans with the goal of lowering rates of suicide and suicidal ideation. They’ve got a tech platform that enables community building and telemedicine-style services, but what Gurudanti has found is that sometimes the most meaningful change is something basic: building trust with communities, particularly those long ignored.
After the conversation with Gurudanti we’ll hear from Kehlin Swain, CEO & Co-founder of Greens by Xplosion Technology, a member of the StartUp Health T1D Moonshot Community. Greens is an app designed to help vulnerable communities – particularly Black and Brown communities in the American South – manage diabetes in a culturally competent way. The app is called “Greens” in honor of one of the biggest cultural disconnects a family member faced as he navigated changing his diet after a diabetes diagnosis.
The common thread between Gurudanti and Swain is using the best tech of today to meet people where they are and to really understand what’s holding them back. Sometimes it’s something basic, like improving internet access or tech literacy, or bringing basic accountability to disease management.
Let’s get into the interviews, recorded live at a recent health tech conference.
Innovating in Alzheimer’s disease? Learn how you can join our new Alzheimer’s Moonshot.
Passionate about Type 1 diabetes? Learn how you can get one of the last spots in our T1D Moonshot.
Want more content like this? Sign up for StartUp Health Insider™ to get funding insights, news, and special updates delivered to your inbox.
Innovators: Health Transformer University fuels your health moonshot
Funders: Become a Health Moonshot Champion
February 23, 2024
February 23, 2024: Christian Carmody, CTO & SVP at UPMC, delves into the profound transformation of analytics and data use within healthcare, tracing the journey from the late 1990s to the present day. How has the advent of cloud technology redefined the way healthcare data is processed, and what does this mean for patient care? They explore the significant shift from traditional, time-consuming data aggregation methods to the rapid, cloud-enabled processes that now support predictive modeling and AI-driven analytics at UPMC. The discussion raises critical questions about the ongoing challenges of integrating legacy systems and the innovative solutions being implemented. How are AI and generative AI being leveraged to enhance patient outcomes, and in what ways are these technologies addressing the complexities of unstructured data and social determinants of health? Join us as they consider the implications of these advancements for the future of healthcare and patient management.Key Points:Cloud Technology ImpactAI Ethics in Patient CareData Aggregation ChallengesCreating Team CultureManaging Company Growth and CutsSubscribe: This Week HealthTwitter: This Week HealthLinkedIn: Week HealthDonate: Alex’s Lemonade Stand: Foundation for Childhood Cancer
February 23, 2024
Are you familiar with BRASH syndrome? The complex interplay of Bradycardia, Renal Failure, Atrioventricular Block, Shock, and Hyperkalemia forms a collection of clinical signs known as BRASH syndrome. One condition leads to another which leads to another, heightening the severity of symptoms. Fortunately, it’s easy to manage if you know what you are treating.In this episode, Sarah Lorenzini breaks down the pathophysiology of BRASH syndrome as she examines a patient case study. Starting with its hallmark features and expanding into the synergistic effects of AV nodal blockers, hyperkalemia and renal failure, she provides insights on recognizing the signs of BRASH syndrome early and the importance of understanding the interplay among its components.Sarah outlines the treatment priorities for BRASH syndrome and highlights the importance of identifying the root cause of symptoms to prevent a cascade of complications leading to shock.Tune in to strengthen your knowledge of BRASH syndrome!Topics discussed in this episode:Case study analysis of a BRASH patientComponents of BRASH SyndromeHow BRASH developed in Sarah’s patientTreatment and management of BRASH SyndromeThe role of calcium in treatment of BRASHYou can learn more about BRASH Syndrome at the Internet Book of Critical Care Website:https://emcrit.org/ibcc/brash/Mentioned in this episode:Rapid Response Academy LinkWanna check out Rapid Response Academy: The Heart and Science of Caring for the Sick?
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This episode was produced by Podcast Boutique https://www.podcastboutique.com
February 23, 2024
In this podcast episode, Dr. Lisa Herbert interviews Dr. John Moore about his career and the Montana College of Osteopathic Medicine's dedication to global health. Dr. Moore discusses his background, Dr. Moore earned his BS degree from the United States Naval Academy and his Doctor of Osteopathy (DO) Degree from Nova Southeastern University. He holds a Master’s Degree in Public Health from the University of West Florida. He completed residencies in Family and Aerospace Medicine while on active duty with the U.S. Navy. Dr. Moore is Board Certified in Family Medicine and a Fellow of the American Academy of Family Physicians. He discusses his role as Assistant Dean of Preclinical Education for the Montana College of Osteopathic Medicine and the college's vision for medical education and its commitment to improving global health, particularly through a partnership with the Gambia. The episode emphasizes the importance of fostering a global perspective among medical students and the value of personal connections in international collaborations. The discussion also touches on the osteopathic focus on holistic care.
Guest Introduction (00:01:50)
Dr. Lisa Herbert introduces Dr. John Moore and discusses the mission of US clinicians traveling to the Gambia for a medical mission trip.
Dr. Moore's Career and Leadership Journey (00:05:35)
Dr. Moore discusses his career in the US Navy, his transition to academia, and his commitment to global health.
Role as Assistant Dean of Preclinical Education (00:09:08)
Dr. Moore talks about his role in creating a conducive learning environment for medical students and faculty at the Montana College of Osteopathic Medicine.
Creating a Sense of Belonging (00:11:17)
Dr. Moore emphasizes the importance of fostering a sense of belonging for students, faculty, and staff at the college.
Commitment to Global Health (00:15:08)
Dr. Moore discusses the college's commitment to global health and its vision to achieve new heights in medical education.
Collaboration with the Gambia Collaborative Project (00:19:52)
Dr. Moore highlights the two-way impact of the collaboration with the Gambia, emphasizing the exchange of knowledge and experiences.
Impact on Medical Students (00:22:09)
Dr. Moore discusses the potential impact of the Gambia mission on medical students, emphasizing the importance of patient interactions and foundational aspects of medicine.
The mind, body, and spirit connection (00:23:50)
Discussion on the principles of osteopathic medicine and how they align with holistic patient care.
Collaboration between Montana College of Osteopathic Medicine and the Gambia (00:24:36)
Exploring the hopes for a learning partnership, faculty and student involvement, and the importance of in-person interaction.
Conclusion and call to action (00:26:08)
Expressing gratitude, anticipation for the partnership's growth, and an invitation to support the Gambia project.
February 23, 2024
In this episode, Mike Asbach and John McDonald are joined by Kate Cozart, The Resilient PharmD, to discuss wellness, imposter syndrome, and burnout in medical education. They explore the need for adaptability and openness to change in healthcare education, the importance of psychological safety and compassion in creating optimal learning environments, and the balance between necessary discomfort and unnecessary stress in medical training. They also discuss the concept of deliberate play in medical education and the role of compassion in improving outcomes and promoting student wellness.
February 23, 2024
Everyone wants care tailored specifically to them, and that’s the promise of personalized medicine. Technologies like genomic sequencing, bioinformatics, gene editing and AI are making personalized medicine possible, but we’re still in the early innings.So what is the potential of personalized medicine? And how soon will we see the results?TOPICS(0:51) What is personalized medicine?(2:02) The promise of genomic understanding(4:46) The benefits of personalized medicine(7:16) What are some of the concerns with personalized medicine?(14:06) Progress and potential risks of personalized medicine🎙️⚕️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 PodcastsGoogle PodcastsFollow us on LinkedIn#healthcare #healthcarepolicy #healthcarebusiness #healthcaretechnology #healthinsurance #personalizedmedicine #genetics Support the showCareTalk: Healthcare. Unfiltered. is produced by Grippi Media Digital Marketing
February 23, 2024
We delve into the intersection of large language models (LLMs) and health care with David Lareau, a health care executive. Since the debut of ChatGPT, the health care sector has been abuzz with anticipation and intrigue regarding the potential applications of LLMs in medicine. However, amidst the excitement lies a critical discussion about the inherent limitations and risks associated with these powerful tools. Join us as we explore the challenges of LLMs hallucinating inaccurate information, the perpetuation of biases in medical data, and the importance of integrating clinical relevancy engines to refine LLM outputs. David Lareau is a health care executive. He discusses the KevinMD article, "The promise and pitfalls of large language models in clinical applications." Our presenting sponsor is Nuance, a Microsoft company. Together, Microsoft and Nuance are leveraging their rich digital technology and advanced AI capabilities to tackle some of health care's biggest challenges. AI-driven technology promises to revolutionize patient and provider experiences with clinical documentation that writes itself. The Nuance Dragon Ambient eXperience, or DAX for short, is a voice-enabled solution that automatically captures patient encounters securely and accurately at the point of care. DAX Copilot combines proven conversational and ambient AI with the most advanced generative AI in a mobile application that integrates directly with your existing workflows. Physicians who use DAX have reported a 50 percent decrease in documentation time and a 70 percent reduction in feelings of burnout, and 85 percent of patients say their physician is more personable and conversational. Discover AI-powered clinical documentation that writes itself. Visit https://nuance.com/daxinaction to see a 12-minute DAX Copilot demo. VISIT SPONSOR → https://nuance.com/daxinaction SUBSCRIBE TO THE PODCAST → https://www.kevinmd.com/podcast RECOMMENDED BY KEVINMD → https://www.kevinmd.com/recommended GET CME FOR THIS EPISODE → https://earnc.me/dSskf5 Powered by CMEfy.
February 23, 2024