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Mike Graglia, SRF Managing Dir. & SYNGAP1 Dad to Tony. Going back to school can be difficult. Tony’s experience shows that it’s so much harder for kids with SYNGAP1!

Show Notes Going back to school is difficult for most kids and their families, but for those living with SYNGAP1 and other rare diseases, it is especially hard! Mike Graglia, SRF Co-Founder & Managing Director and Dad to Syngapian Tony, joins Ashley again to talk about a crisis his family experienced on Tony's first day at a new school. It's easy to talk about the joy we experience with our special kids, but it can be gut-wrenching to discuss (and hear about) the hard days. That makes it so important to share these stories - to make sure our community and those around us can prepare for these possibilities to the best of our abilities. Please, if you have a story to share, email us at [email protected]. Thank you for listening! Tony’s Warrior Story Mike Graglia’s Bio Mike & Ashley’s Story SYNGAP1 Stories ⁠⁠⁠⁠⁠⁠Episode 002⁠⁠⁠⁠⁠⁠ - Mike Graglia More links: Jackie Kancir’s Bio Webinar - Severe Behaviors & Advocacy (with Jackie Kancir) Blog Post - Stella Stays In School: Getting Educational Needs Met Blog Post - A Message To The Newly Diagnosed SynGAP-1 Parent Webinar - Your teenager was just diagnosed with SYNGAP1, processing through a new lens Syngap Soirée Ashley’s Soirée Video Follow ⁠⁠⁠⁠⁠⁠Ashley Frye⁠⁠⁠⁠⁠⁠: ⁠⁠SRF Bio⁠⁠ ⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠ ⁠Facebook⁠⁠⁠⁠ ⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠Nathan’s Warrior Story⁠⁠⁠⁠ SYNGAP1 Stories ⁠⁠⁠⁠⁠Episode 001⁠⁠⁠⁠⁠ - Ashley Frye SRF & SYNGAP1 Info:⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠What is SYNGAP1?⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠ Syngap Research Fund⁠⁠ - ⁠⁠https://syngapresearchfund.org⁠⁠ Donate - ⁠⁠⁠⁠⁠⁠⁠https://Syngap.Fund/Donate⁠⁠⁠⁠⁠⁠⁠ ⁠SYNGAP1 & Epilepsy⁠⁠⁠⁠⁠⁠⁠ ⁠Why Getting a Genetic Diagnosis Matters⁠⁠⁠⁠⁠⁠⁠ ⁠How to Get Free Genetic Testing⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠Special Needs Trusts⁠⁠⁠⁠⁠⁠⁠ Connect with SRF (@curesyngap1): ⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠Twitter⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠TikTok⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠SYNGAP10 Weekly Video Podcast⁠⁠⁠⁠⁠⁠⁠ w/ Mike SYNGAP1 Conference 2023, hosted by SRF - ⁠⁠⁠Registration⁠⁠⁠ Wednesday SRF Family Zoom Meeting: ⁠⁠⁠Syngap.Fund/SRFfam⁠⁠⁠⁠⁠⁠⁠ Meeting ID - 972 0059 2178 Passcode - 848417 Comments: [email protected] Music: ⁠⁠⁠⁠⁠⁠⁠In the Forest... by Lesfm from Pixabay ⁠⁠⁠⁠⁠⁠ Episode 016 SYNGAP1 Stories, August 30, 2023 #SYNGAP1StoriesTony #SynGAP #SYNGAP1 #SYNGAP1Stories #SYNGAP1Stories16 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Keto #School #FirstDayOfSchool #NewSchool
August 30, 2023 by SYNGAP1 Stories

Episode 34 – Michelle Troseth & Tracy Christopherson

Michelle Troseth and Tracy Christopherson have been interprofessional leaders, friends and colleagues for over 30 years. They are co-hosts of a top healthcare leadership podcast, 'Healthcare’s Missing Logic' podcast. Michelle and Tracy have a combined experience of more than 60 years working as consultants and coaches for healthcare organizations across North America supporting healthcare leaders as they strive to create healthy, healing work cultures. They frequently speak at national and international leadership conferences on the topics of managing healthcare polarities, achieving work life balance and living a resilient life. Missing Logic has been featured on CNBC for their work with healthcare organizations and their Healthy Healing Organization (H2O) Framework. Michelle and Tracy have also developed the Dynamic Balance Effect Framework to help healthcare leaders experience joy, live with intention and be their best self at work and at home through their leadership coaching programs.Both frameworks are grounded in Polarity Intelligence, the “missing logic” in healthcare. They have a book coming out in January of 2024 called 'Polarity Intelligence: The Missing Logic in Leadership'. In this episode, Michelle, Tracy and I chat about:Their leadership roles Their leadership styles Their leadership journeys The leaders that helped them rise The challenges they faced on their journeys How they navigated those challenges How they think you can become a strong and kind leader Their ‘take home’ leadership messages for the listeners, and What they are currently excited to be working on.Michelle and Tracy can be found and/or contacted via the following online platform addresses:https://www.missinglogic.com/ [email protected] [email protected] reach out to Dr Harrison for individual coaching and/or organisational training via [email protected] web address and social media profile links / handles include:www.dradamharrison.comhttps://www.linkedin.com/in/dradamharrison/www.youtube.com/c/DrAdamPhysicianCoachhttps://www.facebook.com/coachingmentoringdoctors/https://www.instagram.com/dradamharrison/https://www.tiktok.com/@physiciancoachHe has co-written a new online course entitled ‘How to be Assertive, Maintain Boundaries, and Say “No!”‘ which can be accessed instantly here for only £55/$70:https://tenminutemedicine.podia.com/burnout-to-brilliance-assertiveness-and-saying-no
August 30, 2023 by Inspiring Women Leaders

#216: Applying Polarity Intelligence™: The Journey towards a New Leadership Competency with Cory McCann and Kelly Martin

In this podcast episode, we talk with our special guests, Cory McCann and Kelly Martin, who share their journey toward the new leadership competency of Polarity Intelligence™. Cory serves as the Assistant Vice President for Leadership Development for Intermountain Health. As a certified PACT™ Practitioner, she leverages Polarity Thinking™ to coach teams to supplement problem-solving with a "Both/And" approach to achieve sustainable results over time. Kelly is a current leader at Intermountain Health, where she is a director of hospital care management over five hospitals in the greater Salt Lake City area. In this podcast, Cory and Kelly share their personal experiences with Polarity Intelligence and the impact it has had on their personal and professional lives. We also talk about their greatest hope for having Polarity Intelligence as a norm for healthcare leaders and organizations. For full show notes and links, visit: https://www.missinglogic.com/new-podcast If you found value in this episode, please subscribe and leave us a review on Apple Podcasts! SOCIAL MEDIA LINKS: https://www.linkedin.com/company/missinglogic-llc https://www.facebook.com/missinglogicLLC https://twitter.com/MissingLogicLLC https://www.instagram.com/missinglogic_llc/

#61, AI, Cardiology & Next-Gen Echocardiograms with James Hare & Dr. Carolyn Lam of Us2.ai

Dr. Terence Tan from AWS sits down with Dr. Carolyn Lam and James Hare of Us2.ai who are democratizing echocardiograms through AI. Learn about their regulatory & technical strategy, global impact, and advice for founders.
August 29, 2023 by AWS Health Innovation Podcast

Finding Support and Strength to Navigate the Caregiving Season with Rayna Neises

Register for Everything You've Always Wanted to Know About Living with Dementia September 1 at 10:30 AM EST Watch the June 2021 episode on YouTube *** Rayna Neises comes to us from the heartland of Kansas to share her experience as a former caregiver for parents with dementia. She is the author of No Regrets: Hope for Your Caregiving Season. She also hosts the podcast "A Season of Caring," and is the publisher of "Content Magazine: Finding God in Your Caregiving Season." Our conversation focuses on her belief that caregiving is "a season of life," and the necessity of finding support to navigate its challenges. She offers valuable insights for caregivers who may feel overwhelmed and isolated, and emphasizes the importance of self-care and setting boundaries. Her book, podcast, and magazine offer further support for caregivers seeking to maintain their identity and find moments of respite amidst the chaos. In this podcast, you will: Embrace the enlightening concept of caregiving as a pivotal life season, rather than a mere duty;Learn how to navigate the complex landscape of dementia care unveiling truths that may transform your understanding of caregiving;Acknowledge the urgent need for advanced planning and transparent conversations around personal care choices;Discover that faith-based support groups may offer much-needed comfort in this demanding journey About Rayna Neises Rayna Neises understands the joys and challenges that come from a season of caring. She helped care for both of her parents during their separate battles with Alzheimer’s over a thirty-year span. She looks back on those days now with no regrets – and she wishes the same for everyone caring for aging parents. To help others through this challenging season of life, Rayna has written No Regrets: Hope for Your Caregiving Season, a book filled with her own heart-warming stories and practical suggestions for journeying through a caregiving season. She is an ICF Associate Certified Coach with certifications in both Life and Leadership Coaching from the Professional Christian Coaching Institute. She is also the host of “A Season of Caring Podcast” and a passion speaker. Rayna lives on a farm in southeast Kansas with her husband, Ron, and small pack of adorable dogs. She is the baby of her family, but most would never guess that. A former teacher, she enjoys crafts of all kinds and spending time with her grandkids most of all. Connect with Rayna Facebook.com/ASeasonofCaringRaynaNeises Linkedin.com/RaynaNeises Instagram.com/RaynaNeises Pinterest.com/thcoaching Twitter Website Book 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 visit https://alzauthors.com/donate/ . Thank you for listening. We are a WCN Featured Podcast. Proud to be on The Health Podcast Network. Want to be on the podcast? Here’s what you need to know. AlzAuthors.com Shop our Store

#45 Growing the Orthopaedic Voice within the AMA

Episode Summary: The House of Delegates is the legislative and policy-making body within the American Medical Association (AMA). In this episode, orthopaedic surgeon and AMA Board of Trustees Member Dr. Michael Suk explains how the specialty is represented within the House of Medicine and how initiatives to advance the quality of musculoskeletal care are shared by both organizations.  More on the AMA Recovery Plan for America’s Physicians can be found here.   Guest: Michael Suk, MD, JD, MPH, MBA, FAAOS, Chair-elect, American Medical Association  Host: Adam Bruggeman, MD, FAAOS, FAOrthA, Chair, AAOS Advocacy Council  
August 29, 2023 by AAOS Advocacy Podcast

Fostering Innovation to step forward in Healthcare with Sachin Dev, Vice President of Healthcare (Innovation, Digital Transformation, and Alliance Partnerships) at RGP

Technology and business must combine to bring a hybrid approach to healthcare innovation. In this episode, Sachin Dev talks about RGP’s expertise in assisting payers, providers, and life sciences enterprises with end-to-end business process optimization and transformation. He explains how RGP provides experienced consultants and flexible staffing, prioritizes high-risk opportunities, and expresses excitement about AI revolutionizing healthcare. Learn how RGP's healthcare practice is pioneering innovation and digital transformation! Click this link to the show notes, transcript, and resources: outcomesrocket.health
August 29, 2023 by Outcomes Rocket

How Prior Authorization Impacts Healthcare

Prior authorization. It’s a dreaded phrase for patients and providers alike. Now some health plans like Cigna say they’re cutting back on the practice, and the feds are contemplating restrictions, too. What is prior authorization in healthcare? And can the US healthcare system live without it?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 #healthinsurance #priorauthorization #healthcarefinance #healthcareeconomics #healthcarepolicy #healthcarebusiness  #digitalhealthCareTalk: Healthcare. Unfiltered. is produced by Grippi Media
August 29, 2023 by CareTalk Podcast

Jirair Ratevosian: A Global Health Leader Runs for Congress

Jirair Ratevosian, a respected & well known figure in the field of global health, is running to succeed the Democrat Congressman Adam Schiff in California’s District 30. We explore his decision, the issues facing this Los Angeles community where Jirair grew up, the importance of his Armenian roots - and his thoughts on the funding cliff facing the US President’s Emergency Plan for AIDS Relief. If you want to know more about Jirair’s campaign and how you can help, visit https://jirairforca.com https://www.ashotinthearmpodcast.com https://global-listening.org https://www.state.gov/pepfar https://unaids.org/en https://www.who.int #jirairforca #jirair #ratevosian #CAdistrict30 #PEPFAR #armenianamericans #LGBTQI #healthcare #globalhealth #healthequity

Empowering Physicians to Advocate for Themselves: Dr. Rip Patel’s Advice

Discover how Dr. Rip Patel found fulfillment and reconnected with medicine's values and ethics as a physician. But just when everything seemed to be falling into place as a new emergency physician, he experienced a toxic workplace. Dr. Patel was at a crossroads in his career. How did he navigate this challenge and find fulfillment? Tune in to find out! My special guest is Dr. Rip Patel Dr. Rip Patel is an accomplished emergency medicine practitioner who bucks the industry's traditional norms. After graduating with honors from New York University and UT Southwestern Medical Center, Rip pursued his passion for global health, working on charity medical missions across Central and South America. Rather than being tied down by fixed hospital contracts, Dr. Patel found a way to maintain his standards of practice and personal freedom through locums work. Rip shares his formula for cultivating a meaningful career, in line with his ethics and values. Ultimately, to me, it's about control and controlling my own life, my own practice, how I practice. And it's since allowed me to get back to doctoring. - Dr. Rip PatelIn this episode, you will be able to: Explore the advantages and difficulties of locums work Grasp the art of building lasting alliances with hospitals as a locums physician Acknowledge the vital role of uniform preparation and onboarding in every new hospital assignment. Master the skill of set Are you a healthcare professional looking to empower yourself and advance in your field? Then, you won’t want to miss the transformational Women in Medicine Summit, September 13-14 at the Drake Hotel in Chicago. This event is a powerhouse of inspiration designed to elevate and celebrate women in medicine.Dr. Austin, host of this podcast will be there and hopes you will be too! Are you a physician mom with school-aged children feeling utterly exhausted? Dr. Shafie, an ER doc, coach, and mom to 8-year-old twins, understands firsthand what you're going through. Starting in July, you'll meet for two 1-hour sessions twice a month to help you let go of mom guilt and live a life you can truly enjoy. Connect w/ her on LinkedIn or Instagram MicroSkills is built on one core, easy-to-learn principle: every big goal, complicated task, healthy habit, and, yes, even what we think of as character traits, can be broken down into small, learnable, skills that can be practiced, and incorporated real-time. Pre-order wherever you buy your books or on Amazon; launches Apr 16. Support the Show. Connect with Andrea on Instagram (@andreaaustinmd) or LinkedIn about the show and more, or visit her website www.andreaaustinmd.com. Sign up for her newsletter, “Heartline: Healthcare Needs More Heart” It is your go-to source for insightful content on transforming the healthcare landscape and staying well while changemaking. Join this list to keep up to date on the launch of her forthcoming book, Revitalized: A guidebook to rediscovering your heartline. This book provides a beacon for channeling emotional intelligence not only to survive but thrive in medicine.
August 29, 2023 by Heartline

257: Solving Healthcare Through Integrative Thinking, with Roger Martin

In this episode, we revisit a captivating discussion with none other than Roger Martin. Renowned as the former Dean of the Rotman School of Management at the prestigious University of Toronto and acclaimed author of "When More Is Not Better," Roger Martin graces us with his insights once again. Our conversation explores healthcare solutions, the art of integration, and the invaluable wisdom derived from cross-disciplinary inspiration. Join us as we glean valuable cues and insights from diverse facets of life, enhancing our understanding of innovation and adaptation.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.http://betterhelp.com/solvinghealthcareUse Discount code “solvinghealthcare”OFFERSThank you 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. Get full access to Solving Healthcare Media with Dr. Kwadwo Kyeremanteng at kwadcast.substack.com/subscribe

What’s New with C. Difficile?

Host: Darryl S. Chutka, M.D. [@chutkaMD] Guest: Sahil Khanna, M.B.B.S., M.S. It’s estimated that C. difficile causes about a half million infections each year in the U.S. and 1 in 6 of those will have a recurrence within a couple months. Although C. difficile typically occurs following the use of antibiotics, it can also be spread from one individual to another, especially in hospitals and skilled nursing facilities. What are the common symptoms of an infection with C. difficile? How do we test for it? How should an infection be treated and what do we do with patients who have one or more recurrences. In this podcast, we’ll be discussing “What’s New with C. Difficile?” and these are some of the questions I’ll be asking our guest, Sahil Khanna, M.B.B.S., M.S., a gastroenterologist from the Mayo Clinic. Connect with the Mayo Clinic’s School of Continuous Professional Development online at https://ce.mayo.edu/ or on Twitter @MayoMedEd. 
August 29, 2023 by Mayo Clinic Talks

It’s Ok To Not Be Ok : The Hidden Struggle: Women Not Being Okay and the Importance of Speaking Out

In this episode, we delve into the unique challenges women face in maintaining their mental and emotional well-being, the societal pressures that hinder seeking help, and the empowering act of reaching out for support. Join us as we shed light on this crucial topic and discuss the transformative impact of breaking down barriers and fostering a culture of open conversations surrounding women's mental health. DOWNLOAD your freebies created by Dr. Tara  LEARN for FREE from Dr. Tara JOIN Dr. Tara on TikTok Come say hi over on Tara's Instagram  *Information provided on this podcast provides general health information for educational purposes only. The information provided by me as a fertility coach is not to be used as a substitute for medical advice, cannot diagnose or treat any health condition and does not substitute for care from your healthcare provider. 
August 29, 2023 by Hopeful Hints

Why Can’t I Breathe Through My Nose? (with Michelle Fisher, MD)

Have you ever been unable to breathe through your nose?Isn’t it THE WORST?? We’ve talked on this podcast with other experts (including Dr. Dave Stukus, pediatric allergist about seasonal allergies and our beloved pharmacist Greg Castelli about OTC meds to try for cold symptoms)- but what do you do when you’ve tried the “regular” stuff to unclog your nose, and IT’S NOT WORKING???According to University of Michigan Medicine, nasal and sinus disease affects 31 million Americans, and accounts for 16 million outpatient visits annually in the US. The obstruction of airflow can come from a variety of sources, and the common factor is usually inflammation and swelling of the mucosal lining of the nasal and sinus passages. Sometimes other things can physically obstruct the flow of air, like polyps, or a deviated septum, or sometimes, (if you’re Julie's big sister and its the mid-1980s) a Mike and Ike. So what should we do if we find ourselves mouth-breathing?? What if the neti-pot is a NETI-NOT? (and you’re full of NETI-SNOT??)Welcome to our esteemed guest, Otolaryngologist, Dr. Michelle Fisher!Dr. Fisher is a board certified Adult and Pediatric Otolaryngologist who practices near Tampa, FL at Florida ENT and Allergy. She studied at Emory for UG, Rush for med school (with Julie!) and did residency at Medical College of Georgia. She has authored several publications in the field of Otolaryngology - Head and Neck Surgery and has lectured at conferences and national meetings. She is also an all-around badass and lovely human being :)Key topics in this episode include:What are the main root causes of nasal passage obstruction?What kinds of physical obstructions get in the way of keeping the nasal passages open?What are nasal polyps? Why do they occur?How much does inflammation come into play? How can we treat it/prevent it?What is chronic sinusitis? Who gets it? What are the risk factors?What causes it? Bacteria? Viruses? Fungi?Does sinusitis always need antibiotics?How can we treat it? When is surgery indicated?What is a deviated septum? Why does this happen? How can it be treated?What are some of the simple, in-the-office treatments/procedures that ENTs (Otolaryngologists) can do to treat these issues?Learn more about Dr. Fisher on her profile, HERE. Dr Fisher recommends checking out the American Academy of Otoloaryngology - Head and Neck Surgery website for great resources. For more episodes, limited edition merch, or to become a Friend of Your Doctor Friends (and more), follow this link!Also, CHECK OUT AMAZING HEALTH PODCASTS on The Health Podcast Network Find us at:Website: yourdoctorfriendspodcast.com Email: [email protected] Call the DOCLINE on 312-380-5005 and leave us a message. We will listen and maybe even respond/play it on the show! (Disclaimer: we will not answer specific medical questions or offer medical advice. Consult your healthcare professional with any and all personal health questions.) Connect with us:@your_doctor_friends (IG)@yourdoctorfriendspodcast1013 (
August 29, 2023 by Your Doctor Friends

Transforming Healthcare: From Nurse to Data Analytics Leader

In this episode, Joy is joined by Nora Lissy, VP of Healthcare Consulting and Implementation at Dimensional Insight, a software analytics company. From her nursing origins at Catholic University to operational management in analytics, Nora's adaptability bridges the gap between operational, financial, and IT domains, rendering her invaluable to global hospitals. The heart of the conversation revolves around Dimensional Insight's software. The software's initial application to administrative and staffing data optimized hospital functions, while its evolution to encompass clinical analytics revolutionized patient care, empowering nurses with comprehensive information and even fostering collaborations with pharmacists for high-risk medication management. Nora's metamorphosis from nurse to healthcare IT leader highlights the potent fusion of data analytics and healthcare as she explores the role of technology in shaping the future of healthcare operations and patient well-being.
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