Newsletter

Patient Education Podcasts

Top Podcasts for Patients and Carers

Speak Up For Your Health

A podcast empowering you to advocate for the medical care you want and need

Rethinking Alzheimer’s Disease Podcast

An audio miniseries by Health UNMUTED and Mission Based Media

Beyond Clinical Walls Podcast

Taking health conversations beyond clinical walls.

Café Syngap1

Podcast en Español hosted by Merlina Davila.

SYNGAP10

Weekly 10-minute updates on SYNGAP1 with Mike Graglia.

Solving Healthcare with Dr. Kwadwo Kyeremanteng

Solving Healthcare features interviews and discussions on the topic of improving healthcare delivery in Canada.

SYNGAP1 Stories

Hosted by Ashley Frye

Your Doctor Friends

Approachable Health Information. None of the Garbage. Let us be Your Doctor Friends!

Birthright

A podcast about joy and healing in Black birth

Decentralized: The Decentralized Trials & Research Podcast

A space for all who want to improve access for clinical research and participation.

The Most Important Medicine: Responding to Trauma and Creating Resilience in Primary Care

Where physicians and healthcare professionals meet to discuss what trauma is and how it presents in primary care.

AWS Health Innovation Podcast

Amazon Web Services showcases startups that are advancing healthcare & life science by leveraging cloud computing technology.

RNegade

Nurses Who Don't Just Do What They're Told

When Life Gives You Parkinson’s

10 million people in the World have been diagnosed with Parkinson's disease. Yet, so few people seem to know much about it.

Parkinson’s Disease Podcast

A podcast for people diagnosed with Parkinson's disease and those who care about them

Preventing Type 2 Diabetes Podcast

A podcast for people diagnosed with prediabetes and those who care about them

Living with Alzheimer’s Disease Podcast

A podcast for people diagnosed with Alzheimer's disease and those who care about them

COPD Podcast

A podcast miniseries about chronic obstructive pulmonary disease (COPD), by Health Unmuted

Type 1 Diabetes Podcast

This unique podcast miniseries is the first step-by-step audio guide to help explain type 1 diabetes, connect listeners to trustworthy information and resources, and support them on their journey as they learn to manage and maintain their health.

Flu, Cold and COVID-19 Podcast

This unique podcast miniseries is a step-by-step audio guide to help explain the differences between colds, flu, and COVID-19, and it provides listeners with trustworthy information and resources to make good decisions.

Breast Cancer Podcast

This podcast series features the voices of medical experts and people who have been diagnosed with breast cancer to help listeners find answers to questions, access trustworthy information and resources, and support them on their journey.

Untangling Alzheimer’s & Dementia, an AlzAuthors Podcast

Sharing Our Stories Makes Us Strong

Navigating the Pandemic

Stay informed about COVID-19 in our ever-changing world.

Sports Medicine Weekly with Dr. Brian Cole

The Sports Enthusiast's Official Resource for Fitness, Nutrition, Injury Prevention and Treatment

Once Upon A Gene

True stories of raising rare kiddos

Chasing Life

Dr. Sanjay Gupta is on a mission to help us approach our new normal mindfully, finding a balance between self-care and productivity, and talking to doctors and researchers about the surprising science behind how we can thrive.

Vanderbilt Health DNA: Discoveries in Action

Explore the big ideas and breakthroughs happening at Vanderbilt Health

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Rethinking Alzheimer's Disease Podcast - Listen on Health Podcast Network

Latest Episodes

Unlocking the Potential of Clinical Trial Data: New CRDSA Standards

2024-10-31 Clinical Research Data Sharing Alliance (CRDSA) published two new standards earlier this year: the Standard for Sharing Clinical Study Data and the Standard for Secondary Analysis of Clinical Study Data.We held a great discussion on how these standards aim to facilitate the responsible sharing and use of anonymized individual patient data from clinical studies to support the research community and accelerate the discovery and delivery of new therapies to patients. Data Reuse in Regulatory Submissions: The Role of Data Platforms resource was discussed during the live session as well.You can join TGIF-DTRA Sessions live on LinkedIn Live Audio on Friday's at 12:00 PM ET by checking out our LinkedIn. Follow the Decentralized Trials & Research Alliance (DTRA) on LinkedIn and X. Learn more about Membership options and our work at www.dtra.org.
November 4, 2024
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Progress in Studies, Trials & Community Milestones; Conference #S10e153

STUDIES AND A TRIAL FRAZIER https://curesyngap1.org/resources/studies/tracking-thinking-skills-and-behaviors-in-syngap1-patients/ CHANGES (UK) https://curesyngap1.org/resources/studies/changes-study-adults-an-investigation-into-behaviour-and-physiology-in-syngap1/ PNO https://curesyngap1.org/resources/studies/pregnenolone-treatment-trial-for-individuals-with-autism/   Science: Chow Press - https://curesyngap1.org/blog/dr-clement-chow-at-the-university-of-utah-receives-support-from-syngap-research-fund-srf-to-accelerate-therapeutic-development-for-syngap1-related-disorders-pr30/ Sohal Webinar - https://curesyngap1.org/resources/webinars/94-targeting-gamma-oscillations-to-improve-cognition/ or https://fb.watch/vBYXj4FY7A/    Conference - Conference is 1 month away! Lineup: Science Day lineup - https://x.com/curesyngap1/status/1851723428677456093 Agendas are up! https://curesyngap1.org/events/conferences/syngap1-conference-2024/ Thursday Reception at the Hotel: https://www.eventbrite.com/e/rare-research-reception-tickets-1003668087267 Friday Join us for dinner! https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2024-caregiver-dinner   RESEARCH UPDATE There are 304 papers on or related to SYNGAP1 since 1998, but 46 of those are in 2024! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2024&sort=pubdate&timeline=expanded Latest is from Canada, where they look at the impact of SYNGAP1 on auditory cortex function, social behavior and ability to extinguish fear memories. https://www.jneurosci.org/content/early/2024/10/08/JNEUROSCI.0946-24.2024.long   FUNDRAISING     - Coast2Coast Challenge $92,754 Syngap.Fund/C2C     - Missense Account of the Fund $25,940 https://secure.givelively.org/donate/syngap-research-fund-incorporated/missense-fund    - Charmander $10,585 https://secure.givelively.org/donate/syngap-research-fund-incorporated/running-for-charmander   - Emmy $8,347 https://secure.givelively.org/donate/syngap-research-fund-incorporated/save-emmy-s-future-fund-syngap1-research    Minted Cards - 20% discount, 15% to SRF, code FUNDRAISESYNGAP - https://Syngap.Fund/Minted   Lovely blog on Scramble: https://curesyngap1.org/blog/swinging-for-a-cause-the-3rd-annual-scramble-for-syngap1/   ZOOM BACKGROUND https://drive.google.com/file/d/13jhPIBo-o1sHchEJz6KttocT1_h7GKZE/view?usp=sharing    VOLUNTEER  https://curesyngap1.org/volunteer-with-srf/   FUNDRAISE https://syngap.fund/FR  CFC: #33321 https://curesyngap1.org/srf-cfc-syngap1-combined-federal-campaign/   SOCIAL MATTERS  - 1,200 YouTube.  https://www.youtube.com/@CureSYNGAP1   - 3,818 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ - 11,889 Twitter https://twitter.com/cureSYNGAP1 - 47k Insta https://www.instagram.com/curesyngap1/ - 442 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! https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917Episode 153 of #Syngap10  #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1
November 2, 2024
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#106, Precision Medicine for Neurodegenerative Diseases, with Brian Pepin from Rune Labs

Rune Labs leverages real-world data and digital biomarkers to revolutionize the treatment of neurodegenerative diseases like Parkinson's, enabling personalized and data-driven care.
October 29, 2024
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Physician Turned Caregiver Shares Her Uplifting Alzheimer’s Journey

Unexpectedly, a physician's journey of caring for her father with Alzheimer's disease leads to groundbreaking insights. From reversing cognitive decline to the impact of emotional trauma, Dr. Helena Popovic shares a wealth of evidence-based strategies for caregivers. Her unique blend of personal experience and scientific knowledge sheds light on effective coping strategies and self-care techniques for those caring for individuals with Alzheimer's. Get ready to dive into a treasure trove of information, humor, and wisdom, as Dr. Popovic reveals the power of joy, gratitude, and holistic well-being in the face of Alzheimer's disease. Quotes "The human brain is continually altering its function, cell number, circuitry, and chemistry as a direct result of everything we do, experience, think and believe. This is called neuroplasticity." - Helena Popovic "The most important thing I could give him would be genuine joy, love, enthusiasm. So just looking after ourselves is just in itself already looking after the other person." - Helena Popovic "The greatest gift that we can give to the people we care about are our life force, our energy, our enthusiasm, our passion." - Helena Popovic In this episode, you will: Discover effective coping strategies to ease the challenges of caring for someone with Alzheimer's.Learn about potential methods to slow down or reverse cognitive decline in Alzheimer's patients.Explore the impact of emotional trauma on the risk of developing Alzheimer's and how to mitigate its effects.Uncover self-care techniques to maintain your well-being while caring for a loved one with Alzheimer's.Understand the benefits of practicing gratitude for your mental health and overall resilience. Purchase "In Search of My Father" Connect with Dr. Helena Popovic Facebook Instagram YouTube LinkedIn  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
October 29, 2024
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305: Unlocking Better Sleep: Dr. K’s Essential Tips for Restful Nights

In this episode of Solving Healthcare, Dr. K explores essential strategies for better sleep. He covers how meal timing and food choices impact rest, the importance of reducing evening blue light exposure, and the role of sleep-supporting supplements like magnesium. He highlights the benefits of consistent sleep routines and shares tips for creating a sleep-friendly environment, empowering listeners to optimize their sleep for improved energy, mood, and overall well-being.Listen now on Apple & SpotifySPONSORBetterHelp is the largest online counseling platform worldwide. They change the way people get help with facing life's challenges by providing convenient, discreet and affordable access to a licensed therapist. BetterHelp makes professional counselling available anytime, anywhere, through a computer, tablet or smartphone.Sign up HERE for 10% off | Use discount code “solvinghealthcare”OFFERSGYATA NUTRITIONGyata Nutrition is now live! Founded by Dr. Kwadwo Kyeremanteng, Gyata Nutrition offers top-quality supplements, including New Zealand Whey Protein Isolate, Collagen, Magnesium, and Fish Oil—all Health Canada-approved.Get your Gyata Strong Bundle and save 50%Visit gyatanutrition.com and use promo code kwadcast15 to save on your order now!LMNTWe're excited to announce our partnership with LMNT, a pioneer in superior hydration solutions. The key to proper hydration isn't just water—it's water plus electrolytes. This balance is vital to avoid issues like muscle cramps and energy dips, often caused by the dilution of electrolyte levels from excessive water intake, a condition known as hyponatremia.Enter LMNT, an electrolyte drink mix that's tasty, convenient, and free from sugar or artificial additives. Co-created by Robb Wolf and Luis Villasenor, LMNT provides optimal ratios of sodium, potassium, and magnesium, ensuring not only health and performance benefits but also a delightful taste experience with flavours like Orange Salt, Citrus Salt, and the new Watermelon Salt.To celebrate our partnership, we're offering you a free sample pack.Simply visit DrinkLMNT.com/kwadcast and start your journey to better hydration. LMNT stands behind their product with a no-questions-asked refund policy.Together with LMNT, we're redefining hydration. Remember, it's not just about water—it's about water PLUS electrolytes. Stay hydrated, and stay healthy!LMNTEXAMINE.COMBest source for evidence based nutrition and supplement information.Exclusive Offer for Kwadcast FollowersWe are thrilled to roll out a special offer exclusively for the subscribers of Kwadcast.substack.com, made possible by our new partnership:* 7-Day Free Trial: Start your journey with Examine.com with no strings attached. Explore their exhaustive resources and see how they can aid in meeting your health and wellness objectives.* Discounted Subscription Plans: Enjoy a special discount on Examine.com’s membership, tailored just for you:* Monthly Subscription: Originally $29, now just $25 — a saving of 14%.* Yearly Subscription: Typically $198, now only $171 — saving you 14% as well.Get Your Discounted AccessReady to dive in? Simply use this special link to access these exclusive discounts. The link will direct you to a sign-up page where your discounts will be automatically applied at checkout.Discount LINK for Examine.comSolving Healthcare Media with Dr. Kwadwo Kyeremanteng is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.Thanks for reading Solving Healthcare Media with Dr. Kwadwo Kyeremanteng! This post is public so feel free to share it. This is a public episode. If you’d like to discuss this with other subscribers or get access to bonus episodes, visit kwadcast.substack.com/subscribe
October 29, 2024
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Finding Better Physical Therapy: What to Look For (And Avoid) with Mike Reinold, DPT, ATC

Welcome back, friends! In this exciting and insightful episode, we dive deep into the fascinating world of physical therapy with the help of renowned expert Mike Reinold. We tackle the challenges of finding a quality physical therapist, evaluating the benefits of various types of therapy practices from large corporate chains to small community-focused clinics, and understanding the importance of one-on-one, personalized care. We explore misconceptions about cost, the significance of hands-on treatments, and the crucial role of repetition and communication in achieving superior health outcomes. We also dig into the necessity of educating patients, setting goals, and continuously assessing progress for sustainable, long-term improvement. Whether you're looking for quality care, contemplating cash-based models, or seeking advice on how to choose the right therapist for your specific needs, this episode has got you covered. Join us as we empower you with the knowledge to navigate your physical therapy journey and reap the benefits of truly tailored treatment. Thanks for tuning in! Please sign up for our SUBSTACK For more episodes, limited edition merch, to send us direct messages, and more, follow this link!  Connect with us: Website: https://yourdoctorfriendspodcast.com/ Email us at [email protected] @your_doctor_friends on  Instagram - Send/DM us a voice memo or question and we might play it/answer it on the show or on socials! @yourdoctorfriendspodcast1013 on YouTube @JeremyAllandMD on Instagram, Facebook, and Twitter/X @JuliaBrueneMD on Instagram EPISODE: 00:00 Introduction: The Importance of Finding Good Physical Therapy 00:00 Personal Anecdote: The Struggle to Find Quality Care 00:36 The Challenge of Identifying Good Physical Therapy 01:35 Podcast Episode Announcement 02:07 Introducing Mike Reinald: Expert in Physical Therapy 02:16 Mike Reinald's Background and Experience 03:10 What Constitutes Good Physical Therapy? 05:29 The Role of Word of Mouth in Finding Quality PT 06:34 In-Clinic Experience: What to Expect 07:04 The Importance of Hands-On Time 07:34 Balancing PT and PTA Roles 09:03 Clinic Environment and Equipment 10:04 Challenges in High-Volume Clinics 11:43 Business Models: Corporate vs. Small Practices 14:15 The Benefits of Concierge-Based PT 16:11 Scheduling Flexibility and Individualized Care 17:11 Hands-On vs. Passive Treatments 18:46 Short-Term Relief and Initial Treatment 19:13 Progressing Exercises for Long-Term Improvement 19:35 Importance of Compliance and Accountability 20:15 Finding and Addressing the Root Cause 20:48 Repetition and Habit Building 21:55 Effective Communication and Patient Education 23:04 Evaluating Physical Therapy Effectiveness 24:12 The Role of Physical Therapists and Physicians 28:31 Choosing the Right Physical Therapist 31:22 Final Thoughts and Key Takeaways
October 29, 2024
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The Bittersweet Truth About Sugar

October 25, 2024
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#105, Reducing Healthcare’s $1 Trillion Admin Burden with AI, Abdel Mahmoud, Anterior

Anterior is transforming healthcare with AI that understands clinical jargon, delivering value by automating administrative tasks like prior authorization that cost over $1 trillion annually.
October 23, 2024
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The Coast 2 Coast Challenge benefiting the SYNGAP1 #ProMMiS for Clinical Excellence is critical. #S10e152

Tuesday, October 22, 2024 First Principles Genetic disease means that gene broken since conception. Novel medicines are possible ways to fix the gene - Genetic Therapies (ASO &/or AAV), this is recent, before now, kids with these diseases were a “go home and love them” situation. These are delivered via spinal tap or directly to the brain in leading medical centers. First though, regulators must approve.   Our job Develop medicines or get industry to - This is happening see Pipeline Get regulators to approve trials Get medical centers up to speed on SYNGAP1-Related Disorders (SRD) What we are building on CHOP ENDD funded externally (see #S10e92) and replicating what was built for STXBP1, check last week’s webinar https://curesyngap1.org/resources/webinars/93-endd-chop-2024-syngap1/ Rare-X platform for PRO collection Regulatory pathway being made clearer every day by Stoke (Dravet), Praxis (SCN2A), Ionis (many) all of whom are working on SYNGAP1 as well.   What we are asking for We need to raise at least $500k (3rd site), preferably $1.13M (ProMMiS) Make your largest gift ever to SRF Fundraise with friends and family ACES is now ProMMiS, who knew ACE meant Adverse Childhood Event, not us. Key slides: S1 Path to Treatment | 2024 (09.27.24) 1. Why Now?  Why is it time to go from bench to bedside (research to clinical)? At least 10 companies on our pipeline not to mention multiple small molecule efforts We have limited resources – so the focus has to transition, clinical funding first. CHOP Gift is 1 year down… 2. Why NHS?Understand SYNGAP1 better, go beyond Vlaskamp 2019 and Wiltrout 2024, see #S10e105  FYI at CHOP, as I shared in #S10e151, at year 1, we are at  – 86 (Visits) + 10 (new scheduled) + 19 (2nd) + 4 (3rd)  + 22 (follow up)  Learn what to measure in clinical trials for SRD, remember our seizures are challenging Ideally we develop a Synthetic Control Arm if we use GCP Why top shelf?  We need institutions the FDA will take seriously and our children are very complex requiring experienced clinicians.  3. Why Multidisciplinary. Neuro, Psych, Genetics, PT, ST, OT, GI, Sleep, ENT, Ortho. Beyond the sheer burden of getting our kids out and about for multiple appointments the coordination by a parent is almost impossible.   4. Why Multisite/3 sites?Replicable/scalable required by regulators Accessibility (not primary reason) Establish more locations where trials will be managed Laying a foundation for a national self-sustaining network 3 is the minimum, look at STARR or Angelman, both had/ve 4. 5. How and why so fast? Because we can.  Time is Brain. Following a well trodden path SMA, Rett, Angelman, Dravet, but we are moving FASTER. 6. Does the industry really care? We are next there are so so many behind us, eager to take the resources we have access to today. Market size (Per our Census 425 US/1500 global is tip of iceberg) Multiple players reassuring each other Relatively strong amount of scientific and clinical research Haploinsufficiency (like Dravet – STOKE) – so relatively easy 7. Expensive? No. Clinical Research is more expensive than basic scientific research. Leveraging CHOP and Rare-X, setting up required networks to prepare for clinical trials.  It’s time. 8. Why Bother/Help? Now is the time for SYNGAP1, we miss it at our peril. Sure, once in these places we will still see our patients, but the study, the support and the focus may pass. Our kids don’t die, regardless of patient age, what we are doing can change their future and that of their loved ones and caregivers. If not us, then who? It is a rare exception when a non-family member gives a gift, and it is always because a family member asked.  We must ask. 9. What can I do? Donate to, share, join our Coast2Coast Clinics Challenge – two SYNGAP1 Squads in West and East – it’s critical $500k goal by end of 2024; more than $1M needed just for the SYNGAP1ProMMiS. So far, donations from $25 to $25,000 – each and every contribution matters. This requ
October 22, 2024
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304: The Power of Storytelling in Mental Health with Hailey Hechtman from Unsinkable

In this episode of Solving Healthcare, we're joined by Hailey Hechtman from Unsinkable. Unsinkable is dedicated to supporting mental health through programs like their storytelling initiative, youth peer support, and an entrepreneurs program. The organization highlights the impact of storytelling in fostering connection and offering mental health resources. Hailey shares how Unsinkable's community-driven efforts are bridging the gap between those struggling with mental health and the path to recovery and well-being.Listen now on Apple & SpotifySPONSORBetterHelp is the largest online counseling platform worldwide. They change the way people get help with facing life's challenges by providing convenient, discreet and affordable access to a licensed therapist. BetterHelp makes professional counselling available anytime, anywhere, through a computer, tablet or smartphone.Sign up HERE for 10% off | Use discount code “solvinghealthcare”OFFERSGYATA NUTRITIONGyata Nutrition is now live! Founded by Dr. Kwadwo Kyeremanteng, Gyata Nutrition offers top-quality supplements, including New Zealand Whey Protein Isolate, Collagen, Magnesium, and Fish Oil—all Health Canada-approved.Get your Gyata Strong Bundle and save 50%Visit gyatanutrition.com and use promo code kwadcast15 to save on your order now!LMNTWe're excited to announce our partnership with LMNT, a pioneer in superior hydration solutions. The key to proper hydration isn't just water—it's water plus electrolytes. This balance is vital to avoid issues like muscle cramps and energy dips, often caused by the dilution of electrolyte levels from excessive water intake, a condition known as hyponatremia.Enter LMNT, an electrolyte drink mix that's tasty, convenient, and free from sugar or artificial additives. Co-created by Robb Wolf and Luis Villasenor, LMNT provides optimal ratios of sodium, potassium, and magnesium, ensuring not only health and performance benefits but also a delightful taste experience with flavours like Orange Salt, Citrus Salt, and the new Watermelon Salt.To celebrate our partnership, we're offering you a free sample pack.Simply visit DrinkLMNT.com/kwadcast and start your journey to better hydration. LMNT stands behind their product with a no-questions-asked refund policy.Together with LMNT, we're redefining hydration. Remember, it's not just about water—it's about water PLUS electrolytes. Stay hydrated, and stay healthy!LMNTEXAMINE.COMBest source for evidence based nutrition and supplement information.Exclusive Offer for Kwadcast FollowersWe are thrilled to roll out a special offer exclusively for the subscribers of Kwadcast.substack.com, made possible by our new partnership:* 7-Day Free Trial: Start your journey with Examine.com with no strings attached. Explore their exhaustive resources and see how they can aid in meeting your health and wellness objectives.* Discounted Subscription Plans: Enjoy a special discount on Examine.com’s membership, tailored just for you:* Monthly Subscription: Originally $29, now just $25 — a saving of 14%.* Yearly Subscription: Typically $198, now only $171 — saving you 14% as well.Get Your Discounted AccessReady to dive in? Simply use this special link to access these exclusive discounts. The link will direct you to a sign-up page where your discounts will be automatically applied at checkout.Discount LINK for Examine.comThanks for reading Solving Healthcare Media with Dr. Kwadwo Kyeremanteng! This post is public so feel free to share it.Solving Healthcare Media with Dr. Kwadwo Kyeremanteng is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber. This is a public episode. If you’d like to discuss this with other subscribers or get access to bonus episodes, visit kwadcast.substack.com/subscribe
October 22, 2024
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Prior Authorization Denied? Get This Key Document

Insurance barriers can delay access to necessary medications. In this conversation, David shares his personal journey with osteoporosis, a condition often perceived as a women's disease, and the challenges he is encountering to get the medication he needs. Key Takeaways Men are risk for osteoporosis. It is not just a women's disease. Be proactive: Routine screening for osteoporosis is not recommended for men. So, men with a family history of osteoporosis and/or fractures after minor trauma should proactively request a bone density text, call a DEXA scan Always (always) request a copy of a healthcare denial letter. Don't just accept a verbal communication. Insurance companies are required to put every denial in writing and include the contractual reason for the denial. Share your story with Archelle Newsletter: https://www.archellemd.com/newsletter Email: [email protected] Instagram:  https://instagram.com/speakupforyourhealth Facebook: https://www.facebook.com/speakupforyourhealth
October 22, 2024
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Protein 101: How Much Should You Really Be Eating?

Got protein on your mind? Join us for an in-depth, lively discussion on all things protein! Learn exactly how much you need based on your age and activity level, and steer clear of possible risks like kidney stones. We debunk myths, unveil marketing tricks like 'protein washing,' and provide practical tips for maintaining muscle and optimizing overall health. Utilize tools to track your intake and get the most from your diet. This episode is packed with information to get you excited about taking control of your protein intake! As always, consult your medical professional for personalized advice. Tune in now for an engaging and informative session! Please sign up for our SUBSTACK For more episodes, limited edition merch, to send us direct messages, and more, follow this link!  Connect with us: Website: https://yourdoctorfriendspodcast.com/ Email us at [email protected] @your_doctor_friends on  Instagram - Send/DM us a voice memo or question and we might play it/answer it on the show or on socials! @yourdoctorfriendspodcast1013 on YouTube @JeremyAllandMD on Instagram, Facebook, and Twitter/X @JuliaBrueneMD on Instagram 00:00 Introduction and Listener's Question 00:56 Protein Hype and Marketing 02:13 Unpacking Protein Recommendations 03:42 Daily Protein Intake and RDA 08:46 Protein Needs for Older Adults 14:42 Protein Intake for Middle-Aged Adults 15:21 Protein Intake and Aging 15:39 Optimal Protein Intake for Middle-Aged Adults 16:37 Protein Needs for Younger Adults 18:59 Stratifying Protein Intake by Activity Level 19:55 Combining Age and Activity Recommendations 23:36 Practical Tips for Increasing Protein Intake 31:02 Final Thoughts and Listener Engagement
October 22, 2024
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Nancy Leib Kessler is exceptional: Fundraising, Sibling, Advocating. Do Frazier and come to #SRFConf, #S10e151

📝Full show notes: https://curesyngap1.org/podcasts/syngap10/   Census is at 1,497! Syngap.Fund/Census   Fundraising Season! Gala is tonight in NJ! Syngap.Fund/CLG4 #NLKrox  - UFD Tech, $52,094  - Scramble, $28,000    Current Efforts:     - Coast2Coast Challenge $42,691 Syngap.Fund/C2C     - Missense Account of the Fund $23,684 https://secure.givelively.org/donate/syngap-research-fund-incorporated/missense-fund    - Charmander $10,585 https://secure.givelively.org/donate/syngap-research-fund-incorporated/running-for-charmander   - Emmy $8,173 https://secure.givelively.org/donate/syngap-research-fund-incorporated/save-emmy-s-future-fund-syngap1-research    ONLINE SHOPPINGS EBay - We have an eBay shop sell for SRF! https://charity.ebay.com/charity/i/SynGAP-Research-Fund--Inc-/171038  Amazon - https://curesyngap1.org/blog/srf-amazon-storefront-to-cure-syngap1/   FRAZIER STUDY - Half enrolled! https://Syngap.Fund/Eye2 [email protected]    CHOP is 1!  - 86 (Visits) + 10 (new scheduled) + 19 (2nd) + 4 (3rd)  + 22 (follow up) = DATA  - https://x.com/cureSYNGAP1/status/1843684785740255303     School and Behaviour Go Elle! https://www.govtech.com/education/k-12/special-education-desperate-for-support-amid-severe-behaviors Do you have an advocate and a lawyer? I just got an email from an advocate.  We need to do a webinar with Jackie, Nancy, Elle and others. #NLKrox   On the site Syngap.Fund/Bones & lit review Syngap.Fund/AEDeffect Syngap.Fund/Sibling with the inaugural issue from Nancy #NLKrox  Syngap.Fund/InsWin Insurance with Sara Driscoll    Vicky & Merlina are unstoppable SHER Board: https://www.linkedin.com/posts/sherusaoficial_excited-to-introduce-the-board-of-directors-activity-7250152735403040768-Q18W Colombia Meeting: https://www.linkedin.com/posts/victoria-arteaga-26913433_raredisease-patientsfirst-collaboration-activity-7246975509358612480-InHP  Cafe SYNGAP1 is up to 20!  Syngap.Fund/Cafe    Conference - Conference is 47 days away Agendas are up! https://curesyngap1.org/events/conferences/syngap1-conference-2024/ Register now - https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2024-hosted-by-syngap-research-fund-srf Book a room - https://bookings.omnihotels.com/event/los-angeles-california-plaza/2024%20SRF-SLC6A1-Connect-and-Cure-GABA-A   Industry News - Lundbeck is back into the rare epilepsy space through the acquisition of Longboard for the drug bexicaserin https://www.linkedin.com/posts/anamingorance_lundbeck-signs-25b-check-for-longboard-activity-7251598931069960192-ytkb  MNDU3 re https://pubmed.ncbi.nlm.nih.gov/38967915/ https://www.biospace.com/drug-development/7-children-receiving-bluebirds-gene-therapy-developed-blood-cancers-study   RESEARCH UPDATE There are 303 papers on or related to SYNGAP1 since 1998, but 45 of those are in 2024! https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2024&sort=pubdate&timeline=expanded So much to note, Bateup and Silverman with mice, Vanderhaeghen on SRGAP-2, CHOP on EEG… https://www.cell.com/neuron/fulltext/S0896-6273(24)00645-7   VOLUNTEER  https://curesyngap1.org/volunteer-with-srf/   FUNDRAISE https://syngap.fund/FR - https://curesyngap1.org/srf-fundraising-resources/ now including a webinar from the greats!  CFC: #33321 https://curesyngap1.org/srf-cfc-syngap1-combined-federal-campaign/   SOCIAL MATTERS - AMPLIFY SRF TO MAKE SURE FAMILIES FIND US  - 1,200 YouTube.  https://www.youtube.com/@CureSYNGAP1   - 3,818 LinkedIn.  https://www.linkedin.com/company/curesyngap1/ - 11,889 Twitter https://twitter.com/cureSYNGAP1 - 47k Insta https://www.instagram.com/curesyngap1/ - 442 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 Apple Podcast Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917Episode 151 of #Syngap10 - Friday, October 18th, 2024 #
October 18, 2024
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#104, Decoding the Immune System with AI, Adam Laing from IMU Biosciences

Leveraging an AI-powered immune profiling platform, IMU Biosciences creates unprecedented insights into health and disease by measuring and analyzing the immune system at an unparalleled scale and resolution.
October 15, 2024
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The Venn Diagram of Point of Care Trials, DCTs, and RWE

2024-10-10 Hosts Craig Lipset, Dr. Amir Kalali, and Jane Myles were joined by Matt Veatch and Aaron Kamauu, hosts of the Real World Wednesday's Club on Clubhouse. We joined forces for a TGIF-DTRA + RWW Crossover Episode! With the release of the FDA Draft Guidance on Integrating Randomized Controlled Trials for Drug and Biological Products Into Routine Clinical Practice, it was the perfect topic to bring together the DCT and RWE community for a conversation around this guidance. We discussed why this guidance was aligned to RWE, the distinctions between decentralized, pragmatic, point-of-care trials, and real-world evidence, and how RCTs and DCTs can drive access for all patients.Read the guidance here --> https://www.fda.gov/media/181871/downloadYou can join TGIF-DTRA Sessions live on LinkedIn Live Audio on Friday's at 12:00 PM ET by checking out our LinkedIn. Follow the Decentralized Trials & Research Alliance (DTRA) on LinkedIn and X. Learn more about Membership options and our work at www.dtra.org.
October 15, 2024
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Navigating Dementia with Faith, Forgiveness, and Freedom with Dorothy Horne

Have you heard these myths about faith's role in caregiving? Myth 1: Faith won't make a difference in the practical challenges.Myth 2: Caregivers must be perfect in their faith to make a difference.Myth 3: Faith won't alleviate the emotional toll of caregiving. Let's unravel them with our guest Dorothy Horne in this replay of Books & Chit Chat with Aging & Amazing. We touch on everything from clinical trials to the role of faith, and the power of community and positive narratives on the dementia journey. Dorothy, a retired first-grade teacher and former columnist for a local newspaper, brings a unique perspective to the conversation as she shares her caregiving journey with her husband, Byron, who was diagnosed with early-onset Alzheimer's. Through her faith and resilience, Dorothy has found moments of grace and strength in the midst of the challenges of dementia caregiving. Her heartfelt reflections and personal experiences offer valuable insights into the role of faith in navigating the complexities of Alzheimer's and dementia, providing inspiration and support for others on similar paths. She has shared these insights in two books: Glimpses of Grace: Walking in Hope Through Alzheimer's and Ordinary Days and Glimpses of Grace: And Grace Will Lead Us Home.  In this episode, you will: Explore the profound impact of faith in providing strength and comfort while navigating the challenges of dementia caregiving.Learn how to break free from the negative stereotypes and misconceptions surrounding an Alzheimer's or dementia diagnosis.Encounter the concept of “lightbearers” and how to become one.Discover the transformative power of community support in finding emotional resilience and practical assistance.Prepare for a positive and fulfilling life beyond caregiving by understanding the transition process and available resources After the podcast Read Dorothy’s AlzAuthors post Purchase Glimpses of Grace: Walking in Hope Through Alzheimer's and Ordinary Days and Glimpses of Grace: And Grace Will Lead Us Home now. Note: We are an Amazon Associate and may receive a small commission from book sales. Connect with Dorothy Website Facebook Twitter LinkedIn Mentions Michael Verde's work - For those interested in Michael Verde's work and his insights on dementia care, you can explore his organization, Memory Bridge, and access his resources and speaking engagements. 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
October 15, 2024
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303: Revolutionizing Physician Collaboration with Tim Rice, CEO of The Rounds

In this amazing episode of Solving Healthcare, we're joined by Tim Rice, CEO of The Rounds. Tim introduces their collaborative network for physicians, emphasizing its role in overcoming geographical barriers and supporting physician well-being. The episode explores how this approach is reshaping healthcare delivery and professional collaboration.Listen now on Apple & SpotifySPONSORBetterHelp is the largest online counseling platform worldwide. They change the way people get help with facing life's challenges by providing convenient, discreet and affordable access to a licensed therapist. BetterHelp makes professional counselling available anytime, anywhere, through a computer, tablet or smartphone.Sign up HERE for 10% off | Use discount code “solvinghealthcare”OFFERSGYATA NUTRITIONGyata Nutrition is now live! Founded by Dr. Kwadwo Kyeremanteng, Gyata Nutrition offers top-quality supplements, including New Zealand Whey Protein Isolate, Collagen, Magnesium, and Fish Oil—all Health Canada-approved.Get your Gyata Strong Bundle and save 50%Visit gyatanutrition.com and use promo code kwadcast15 to save on your order now!LMNTWe're excited to announce our partnership with LMNT, a pioneer in superior hydration solutions. The key to proper hydration isn't just water—it's water plus electrolytes. This balance is vital to avoid issues like muscle cramps and energy dips, often caused by the dilution of electrolyte levels from excessive water intake, a condition known as hyponatremia.Enter LMNT, an electrolyte drink mix that's tasty, convenient, and free from sugar or artificial additives. Co-created by Robb Wolf and Luis Villasenor, LMNT provides optimal ratios of sodium, potassium, and magnesium, ensuring not only health and performance benefits but also a delightful taste experience with flavours like Orange Salt, Citrus Salt, and the new Watermelon Salt.To celebrate our partnership, we're offering you a free sample pack.Simply visit DrinkLMNT.com/kwadcast and start your journey to better hydration. LMNT stands behind their product with a no-questions-asked refund policy.Together with LMNT, we're redefining hydration. Remember, it's not just about water—it's about water PLUS electrolytes. Stay hydrated, and stay healthy!LMNTEXAMINE.COMBest source for evidence based nutrition and supplement information.Exclusive Offer for Kwadcast FollowersWe are thrilled to roll out a special offer exclusively for the subscribers of Kwadcast.substack.com, made possible by our new partnership:* 7-Day Free Trial: Start your journey with Examine.com with no strings attached. Explore their exhaustive resources and see how they can aid in meeting your health and wellness objectives.* Discounted Subscription Plans: Enjoy a special discount on Examine.com’s membership, tailored just for you:* Monthly Subscription: Originally $29, now just $25 — a saving of 14%.* Yearly Subscription: Typically $198, now only $171 — saving you 14% as well.Get Your Discounted AccessReady to dive in? Simply use this special link to access these exclusive discounts. The link will direct you to a sign-up page where your discounts will be automatically applied at checkout.Discount LINK for Examine.comSolving Healthcare Media with Dr. Kwadwo Kyeremanteng is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.Thanks for reading Solving Healthcare Media with Dr. Kwadwo Kyeremanteng! This post is public so feel free to share it. This is a public episode. If you’d like to discuss this with other subscribers or get access to bonus episodes, visit kwadcast.substack.com/subscribe
October 15, 2024
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The Race to Save a Life: A Doctor’s Heroic CPR Rescue at the Berlin Marathon

Our Berlin Marathon Experience: A Life-Saving Moment In this podcast episode, we share the incredible story of our friend, Dr. Eliza Pierko, a sports medicine physician. During her fifth marathon in Berlin, we were amazed to learn how she stopped at mile 21 to administer CPR to a fellow runner who suffered cardiac arrest. Despite this unexpected challenge, she resumed the race and achieved a personal best. We dive into this remarkable life-saving event, emphasizing the importance of CPR knowledge and highlighting Dr. Pierko's journey, including her recovery from a severe ankle injury. As hosts, we reflect on the heroic nature of Dr. Pierko's actions and encourage our listeners to learn CPR, showing that with the right training, any of us can save a life Thanks for tuning in, friends! Please sign up for our SUBSTACK For more episodes, limited edition merch, to send us direct messages, and more, follow this link!  Connect with us: Website: https://yourdoctorfriendspodcast.com/ Email us at [email protected] @your_doctor_friends on  Instagram - Send/DM us a voice memo or question and we might play it/answer it on the show or on socials! @yourdoctorfriendspodcast1013 on YouTube @JeremyAllandMD on Instagram, Facebook, and Twitter/X @JuliaBrueneMD on Instagram 00:00 Introduction and Teaser 00:21 Meet Dr. Elisa Pierko 00:54 The Berlin Marathon Incident 02:08 Interview with Dr. Elisa Pierko 04:35 Dr. Pierko's Running Journey 07:32 The Day of the Marathon 09:37 The Emergency Response 12:31 Reflecting on the Experience 18:37 The Importance of Immediate CPR 19:32 Calling for Help and Team Coordination 20:47 Administering the Shock 22:10 Continuing the Marathon 22:44 Emotional Aftermath 25:28 Support from the Running Community 31:33 Reflecting on the Experience 33:30 Encouraging CPR Training
October 15, 2024
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How can Academic Health Centers inject innovation back into clinical trial conduct?

2024-10-11 Hosts Craig Lipset, Jane Myles, and Dr. Amir Kalali were joined by Donna O'Brien and Rachel Sher (Manatt) and how their work is expanding access and enrollment and driving innovation for clinical trials in academic centers.You can join TGIF-DTRA Sessions live on LinkedIn Live Audio on Friday's at 12:00 PM ET by checking out our LinkedIn. Follow the Decentralized Trials & Research Alliance (DTRA) on LinkedIn and X. Learn more about Membership options and our work at www.dtra.org.
October 14, 2024
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Marielle’s Medical Mystery: 11 Years To A Diagnosis

Patients with rare conditions can often wait months or years for a diagnosis. In the meantime, they suffer – wondering if their symptoms are real or in their head. Marielle Lejcher had severe abdominal pain for 11 years before she found one very good doctor who took the time to put all the puzzle pieces together and ordered the right test. Key Takeaways: See a specialist. While you should generally start with your primary care physician, see a specialist if they aren't sure about your diagnosis or if your symptoms are getting worse despite treatment. Self-refer to a specialist (if your PCP doesn't want to refer you). Today, most health insurance plans don't require a referral. So if your PCP doesn't recommend seeing someone else, self-refer. And if that specialist doesn't arrive at a definitive diagnosis, make an appointment with a specialist with different expertise. Keep a journal. Write down the details about your symptoms. The details matter because a complex diagnosis is like a big puzzle, and the smallest detail can be the missing piece of information that helps the physician suspect an obscure condition. Share your story with Archelle Newsletter: https://www.archellemd.com/newsletter Email: [email protected] Instagram:  https://instagram.com/speakupforyourhealth Facebook: https://www.facebook.com/speakupforyourhealth
October 11, 2024
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Caring for a Wife with Alzheimer’s or Dementia

Caring for a spouse with dementia is a deeply challenging and emotional journey. In this episode, hosts Marianne Sciucco and Christy Byrne Yates bring together three extraordinary guests: Richard Creighton (aka Frank Brown), Scott Rose, and Tio Stib (aka Stephen Miller), who share their personal experiences and hard-earned insights. Richard Creighton shares his journey caring for his wife Kate, who is in the advanced stages of Alzheimer's. He discusses the daily routines that bring them joy and emphasizes the profound impact of kindness and community support. Richard blogs about their Alzheimer’s journey at Living with Alzheimer’s.com. Learn more about Richard at AlzAuthors.com. Scott Rose opens up about the heartbreaking realization of his wife Maureen’s cognitive decline due to frontotemporal dementia. He chronicles their experience in his book We Danced: Our Story of Love and Dementia, and highlights the importance of maintaining dignity and understanding communication challenges. Learn more about Scott on AlzAuthors.com. Tio Stib, who lost his sight around the same time his wife, Maria, was diagnosed with Alzheimer's, offers a unique perspective. He captures their poignant and humorous moments in his book My Dementia Diary: A blind caregiver’s journey with his wife and her dementia, and discusses the cultural differences in dementia care between Mexico and the U.S. Learn more about Tio at AlzAuthors.com.  After the podcast  Purchase We Danced: Our Story oove and Dementia Purchase My Dementia Diary: A blind caregiver’s journey with his wife and her dementia Note: We are an Amazon Associate and may receive a small commission from book sales.  Resources mentioned: Judy Cornish, The Dawn Method Lingraphica - A device that can help with communication for individuals with speech and language difficulties due to dementia. Security Camera with Two-Way Speaker - A security camera with a two-way speaker can be used to communicate with a loved one who may have difficulty using traditional communication devices. It allows for verbal interaction and reassurance. Children's Songs - Using familiar children's songs can help soothe and engage individuals with dementia, providing a sense of comfort and familiarity. Love and Patience - The most important takeaway is the need for love, patience, and understanding when caring for a loved one with dementia. This includes being patient with family members and caregivers who may have different perspectives on the care process. 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
October 11, 2024
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