Patient Education Podcasts

Ahora nos vamos al Sur de América para oír la historia de Diana Ramirez y su hija Luhana. Su caso fue el primer diagnóstico con Syngap1 encontrado en Perú. Con un reciente diagnóstico, Diana nos abre las puertas de su hogar para contarnos todo sobre el proceso de obtener un diagnóstico y cómo poco a poco se va informando y conociendo más de Syngap1 con el propósito de ayudar a su hija. Entre todo, nos demuestra su valentía y resiliencia para salir adelante. Bio de ⁠⁠Merlina⁠⁠ Información sobre SRF & SYNGAP1: ⁠⁠Syngap Research Fund⁠⁠ ⁠⁠Que es SYNGAP1?⁠⁠ ⁠⁠Recursos en Español⁠⁠ Donaciones: ⁠⁠https://syngap.fund/Donate⁠⁠ ⁠⁠SYNGAP1 & Epilepsia⁠⁠ ⁠⁠Porque es Importante Obtener un Diagnóstico Genético⁠⁠ ⁠⁠Cómo Obtener Pruebas Genéticas Gratuitas en EEUU⁠⁠ ⁠⁠Planificación Financiera Futura para las Personas con Discapacidades ⁠⁠ Comentarios: ⁠⁠⁠[email protected]⁠⁠⁠ Conéctate con SRF (@curesyngap1): ⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠Twitter⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠TikTok⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP10 Video Podcast⁠⁠⁠ Semanal⁠⁠⁠⁠ con Mike Episodio 14 Café SYNGAP1, Abril 18, 2024 #CafeSYNGAP1 #Syngap #SYNGAP1 #CafeSYNGAP1Luhana #Peru #epilepsia #epilepsy #epilepsyawareness #autismo #autismawareness #discapacidadintelectual #id #enfermedadesraras #FondodeInvestigacionSYNGAP #SynGAPResearchFund #abogacia #advocacy #patientadvocacy #neurologia #pruebasgeneticas #terapias #familia #apoyo

Delight in the surprising journey of Ruth Stevens, from crafting a stage play to penning a heartfelt novel about Alzheimer's. Delve into the unexpected twists and turns as Ruth shares her personal experiences and the emotional impact of her work. Stay tuned for eye-opening insights on turning personal stories into fiction and a sneak peek into her upcoming duology. Get ready to be captivated by Ruth's incredible journey, as she shares the highs and lows of her creative process. For our March installment of Books & Chit Chat, our monthly Book Club collaboration with Aging & Amazing, we talk with Ruth Stevens, a former public relations professional from New York City and LA, and the author of the debut novel "Stage Seven," inspired, in part, by her personal experience dealing with her mother's Alzheimer's disease and decline. A fiction story acquisitions editor with AlzAuthors and a member of the Dramatists Guild of America and Women's Fiction Writers Association, Ruth brings a unique perspective to her writing, infusing humor and tenderness into a difficult topic. Her storytelling abilities, honed through a career in creative writing, advertising campaigns, and numerous articles for magazines, newspapers, and journals, shine through in her work, offering a compelling and relatable portrayal of Alzheimer's and its impact on family dynamics. Like enjoying a performance of her play, you’ll laugh, you’ll cry, you’ll learn a lot. Have a listen. Quote:  “I feel like your play gave me permission to move on with my life”. - Audience member In this episode, you will:  Explore real-life Alzheimer's caregiving experiences and gain insights into navigating the challenges with compassion and understanding.Discover the art of turning personal stories into compelling fiction, finding inspiration from the heart-wrenching yet beautiful moments of caregiving.Uncover the captivating journey within the novel "Stage Seven" by Ruth Stevens, delving into the emotional landscape of Alzheimer's and its impact on families.Understand the profound impact of Alzheimer's on family dynamics, gaining new perspectives on how to navigate relationships and support systems during difficult times. After the Podcast Buy the Book Stage Seven Find more about Ruth Stevens at https://ruthfstevens.com/ Listen to Ruth on on the Hilarity for Charity (HFC) and AlzAuthors Summer Book Club Follow Ruth on Social Media: Instagram  Facebook Goodreads  Blog  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

LabVoice develops a hands-free voice assistant that provides a common human-lab interaction for scientists, enabling voice-assisted workflows and hands-free access to lab software and data.

Roxane has been on a nine month journey with pancreatic cancer and now has only days or weeks to live. She explains why she chose to get aggressive treatment early on and later decided to stop treatment and transition to hospice. Roxane's story and optimistic outlook are uplifting because she is living every moment...while she's dying. Key Takeaways Use every living moment wisely. Even if you're getting aggressive treatment and have hope that cancer treatment will be successful, take advantage of all the time you have. Address the details that give you comfort and control; this will eventually decrease the burden on your family. Hospice is not something to be afraid of. Studies have shown that patients in hospice actually live longer than those with a similar diagnosis who don't receive hospice care. Unfortunately, over 1/2 of all patients are only in hospice for 17 days or less because patients are referred so late in their illness. Get in touch with Archelle Email: [email protected] Instagram:  https://instagram.com/speakupforyourhealth Facebook: https://www.facebook.com/speakupforyourhealth

What happens when you turn 40 (and you also have boobs)? Well, since May 2023, the USPSTF has recommended that women at average risk for breast cancer start screening with mammograms beginning at age 40, and undergo mammography every other year.  These updated recommendations are still “in progress” and the USPSTF cites the urgent need for more research on:  breast cancer screening for people with dense breasts (nearly half of all women),  how to particularly protect women of color In the US, there exists a long history of health disparities across screening and treatment for breast cancer.  The Task Force discusses, for example, that Black women are 40% more likely to die than White women, and too often get aggressive cancers at young ages.  So, Your Doctor Friends are taking a page from America’s Sweetheart (and breast cancer survivor herself) Katie Couric. You may remember Katie both underwent a colonoscopy AND a mammogram on the Today Show, and YDF Julie wants to do the next best thing- consult with a breast cancer expert before she gets her FIRST EVER MAMMOGRAM! Your Doctor Friends have the absolute honor to present our guest today, a consummate badass, breast cancer survivor and breast surgeon, to walk Julie through her own personal risk assessment and screening process for breast cancer.  Finally, we want to take some time at the end of this episode to share the story of a dear friend and colleague, a fellow sports medicine doctor, and absolute amazing human being, who very recently lost her life to breast cancer. She is the inspiration for this episode and Your Doctor Friends think it’s important to talk about her, and are so grateful to her family for their consent to share her story.  Learn more about Dr. Kristin Abbott here. Alright, let’s get on with it, can we answer the question: Can I protect myself from breast cancer? ENTER Dr. Liz O’Riordan to help us find out! Dr O'Riordan is an expert breast surgeon who has had breast cancer three times. She's a best-selling author, speaker, broadcaster and podcaster and is a trusted source of reliable information.  She shares helpful, approachable, valid breast cancer information online, we found her via her IG account @oriordanliz, she also has a podcast called “So Now I’ve Got Breast Cancer”, and she’s published tons of helpful work, including her book “The Complete Guide to Breast Cancer” and her memoir “Under the Knife”. She also has her own wikipedia page, which is pretty rad :) Resources for today's episode include: Dr. O'Riordan's website. Link to the Tyrer-Cuzick Risk Assessment Calculator for breast cancer. The USPSTF's "In Progress" updated guidelines for breast cancer screening. The Breast Cancer Research Foundation's info page on updated USPSTF Breast Cancer Screening Guidelines. Thanks for tuning in, folks! Please sign up for our "PULSE CHECK" monthly newsletter! Signup is easy, right on our website page, and we PROMISE we will not spam you! We just want to send you cool articles, videos and thoughts :) For more episodes, limited edition merch, or to become a Friend of Your Doctor Friends (and more), follow this link!   Find us at: Website: yourdoctorfriendspodcast.com  Email: [email protected]  Connect with us: @your_doctor_friends (IG) Send/DM us a voice memo/question and we might play it on the show! @yourdoctorfriendspodcast1013 (YouTube) @JeremyAllandMD (IG, FB, Twitter) @JuliaBrueneMD (IG) @HealthPodNet (IG)

When Marian Dancy speaks, her story resonates with an urgency that commands attention. It's a tale that is all too familiar, yet still desperately needs to be heard: a stark illustration of why self-advocacy is not just important, but potentially life-saving in Black maternal health. On Beyond Clinical Walls, we open our hearts to the powerful narratives of Marian, and Leslie Jordan who, with harrowing clarity, recounts her own experience with pain mismanagement. Together, these women's voices form a symphony of strength, drawing a spotlight on the pressing need to address the healthcare disparities that leave Black mothers at risk.As we navigate through these deeply personal and eye-opening accounts, we uncover the nuanced relationship between a patient's composure and the perception of pain in the healthcare setting. The humbling journey Leslie shares, marked by a near-loss of life, reveals the stark consequences of cultural insensitivity and the importance of recognizing and validating pain in all its forms. Their stories are not isolated incidents; rather, they are part of a broader conversation that extends well beyond Black Maternal Health Week. This episode is a testament to the power of vulnerability, patient education, and relentless advocacy in the fight for equitable healthcare.Wrapping up this episode, we reflect on resilience, gratitude, and the profound realization that our struggles do not define our worth. I, Dr. BCW, invite you to carry the empowering messages from Marian and Leslie with you—let them be a beacon of hope in challenging times. Thank you for joining us on this journey, where the shared experiences of our guests remind us of our shared humanity and the critical need for change in the narrative of Black maternal health.Thank you for Listening to Beyond Clinical Walls Podcast.To find more from Dr. BCW YouTube: https://www.youtube.com/@BeyondClinicalWalls Instagram: https://www.instagram.com/dr_bcw/ TikTok: https://www.tiktok.com/@dr_bcw Twitter: https://twitter.com/dr_bcw

2024-04-12 Hosts Amir Kalali, MD and Jane Myles were joined by Stacey Adam, Vice President, Science Partnerships for the Foundation for National Institute of Health. She shared about her experiences with platform trials, DCT methods, and how they are working to drive innovation further for patients.Follow the Decentralized Trials & Research Alliance (DTRA) on LinkedIn and Twitter. Learn more about Membership and our work at www.dtra.org.

As we sit down with the fervent Dr. George Ackerman, he unveils the depths of his dedication to battling Parkinson’s disease, a quest born from the profound loss of his beloved mother, Sharon. "Together for Sharon" is not just an initiative; it's a beacon of hope, symbolizing the relentless fight against the silent encroachment of a disease that robbed him of a loved one. Our conversation traverses the rough terrain of early detection, the pitfalls of misdiagnosis, and the overarching need for heightened awareness. Dr. Ackerman imparts the tale of his mother's battle with Parkinson's, her struggles with its surreptitious symptoms, and the dire need for our collective resolve in this escalating fight. We weave together the power of human stories, which serve as the catalyst for change and a torchlight pointing towards a more informed future, where Parkinson's disease is not a whispered fear but a challenge we meet head-on.The dialogue takes a turn to spotlight the broader societal implications of understanding Parkinson's, touching on the heartrending incident of a woman with Parkinson's unjustly ousted from TikTok due to misinformed perceptions. The urgent call for comprehensive education within law enforcement becomes apparent, emphasizing its criticality in sensitively managing interactions with those affected by such conditions. My own journey of interviewing individuals across the globe who live with Parkinson’s threads into our discussion, underscoring the transformative power of shared knowledge and empathy. This episode is an intimate expedition outside the traditional clinical confines, inviting listeners to join a movement where awareness isn't just about recognition but about active and compassionate support. Remember to subscribe and engage with our content to keep pace with the narratives that transcend the clinical realm on Beyond Clinical Walls.Thank you for Listening to Beyond Clinical Walls Podcast.To find more from Dr. BCW YouTube: https://www.youtube.com/@BeyondClinicalWalls Instagram: https://www.instagram.com/dr_bcw/ TikTok: https://www.tiktok.com/@dr_bcw Twitter: https://twitter.com/dr_bcw

Show Notes Rainy Schlosser is in the middle of a 7,500 mile drive-a-thon to participate in 3 studies to help find a cure for SYNGAP1. She talks with Ashley about the studies, her daughter Hope's incredibly difficult medical journey, what makes Hope happiest, an EEG with Curious George, and the wonderful connections they are making along the way! This is a fundraiser, so please check out Syngap.Fund/Hope4theCure! All episodes are available at ⁠⁠⁠⁠⁠⁠Syngap.Fund/Stories⁠⁠⁠⁠⁠⁠. ⁠⁠Hope's Warrior Story⁠⁠⁠ My SYNGAP1 Drive-a-thon, Hope4theCure Connect with Rainy & Hope: Instagram - @Hope4theCure YouTube - @Hope4theCure Facebook - Hope SelahMay Other Links Cannonball for the Cure Connect with ⁠⁠⁠⁠⁠⁠Ashley⁠⁠⁠⁠⁠⁠: ⁠⁠⁠⁠⁠⁠⁠[email protected]⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠Ashley's 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://curesyngap1.org/⁠⁠⁠⁠ ⁠⁠⁠⁠SYNGAP1 Resources for Newly Diagnosed Families⁠⁠⁠⁠ ⁠Wednesday Warriors⁠ ⁠⁠⁠⁠Supporting SYNGAP1 Siblings⁠⁠⁠⁠ Donate - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://Syngap.Fund/Donate⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP1 & Epilepsy⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Why Getting a Genetic Diagnosis Matters⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠How to Get Free Genetic Testing⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Special Needs Trusts⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠SYNGAP1 Family Day 2023 – A Beacon of Hope!⁠ (blog with videos) ⁠⁠⁠⁠Pre-register⁠⁠⁠⁠ for SYNGAP1 Conference 2024 Connect with SRF (@curesyngap1): ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Twitter⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Instagram⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠LinkedIn⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠TikTok⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ YouTube ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠SYNGAP10 Weekly Video Podcast⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠⁠w/ Mike SynGAP Research Fund ⁠⁠⁠⁠⁠⁠⁠⁠Apple Podcast Channel⁠⁠⁠⁠⁠⁠⁠⁠ Family Zoom Meeting (Weekly on Wednesdays, 8PM ET): ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Syngap.Fund/SRFfam⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Meeting ID - 972 0059 2178 Passcode - 848417 Sibling Zoom Meeting (Monthly on 1st Thursday, 8PM ET): ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Syngap.Fund/SRFfam⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Meeting ID - 972 0059 2178 Passcode - 848417 Comments: ⁠⁠⁠⁠⁠⁠[email protected]⁠⁠⁠⁠⁠⁠ Music: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠In the Forest... by Lesfm from Pixabay ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Episode 028 SYNGAP1 Stories, April 11, 2024 #SYNGAP1StoriesHope #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp28 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #SyngapConf #SYNGAP1Siblings #Caregiver #Elopement #Behavior #Communication #Hope4theCure #Driveathon

ONCE UPON A GENE - EPISODE 225 The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman Noah Siedman was a big brother to Ben who had Sanfilippo Syndrome, a devastating disease that leads to childhood dementia and premature death. He joins me to talk about his sibling experience and dealing with grief. EPISODE HIGHLIGHTS As a sibling under potential pressure to not be a burden, do you still carry those feelings even after Ben's passing? It's hard as a sibling to see everything your parents are facing that's out of your control. As a sibling, there's a need to be on top of your own care and your own emotions. There were no casual complaints in my family growing up. It was either a disaster or business as usual. Filling in that middle space where you have a bad day and want to talk about it didn't exist. We've had to work on that as a family because that's not how we've functioned.  What coping mechanisms help you to write and talk about your experience? I came to the realization that I was going to be emotionally vulnerable, which is uncomfortable. Knowing I would have to talk about my experience and brother, I had to accept it, put it out front, and get really good at talking about it comfortably. I got more comfortable talking about the progression of my brother's disease and my feelings around him, and I used it as a shield.  What would you say to the young person who is living the same life you were living and what questions should people ask that person? The first thing that I would say, and maybe the best thing to ask that person, is about their roles. When do you feel like a sibling? When do you feel like a caregiver? When do you feel like you're an advocate? When do you feel like you are just you? I got stuck in trying to be a lot of those things at once, where the easiest role to ignore was being just me. But everything you push down morphs into something worse. Frustration turns into resentment, fear turns into trepidation, sadness becomes melancholy.  What are the misconceptions people have about death? The biggest problem with grief is that no amount of experience is applicable. It defies the ability to be prepared for it or to use your past to help you cope. I don't think grief gets easier, I think you get better at it. Those that try to give advice to people that are grieving are hanging on to the idea that that time will heal. It's not that your grief goes away, it's that you get better at it. How has your relationship with your sister changed? Ben's death brought us closer and we do a good job of communicating despite handling things differently. There's no right or wrong way to navigate life with a sibling who has a genetic disorder, so we don't judge each other and we're honest with each other.  As a parent, how do you help siblings to have a better experience? Abandon the idea that you owe siblings normalcy. My parents put a lot of effort into delivering normal childhood experiences. Instead, put that energy into helping your children articulate what they want. More important than chasing normal is helping siblings decide what's important to them and how to pursue it. LINKS & RESOURCES MENTIONED ONCE UPON A GENE - Episode 109 - A Rare Collection - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins https://effieparks.com/podcast/episode-109-what-i-know-for-sure CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/

Alzheimer’s disease is a complicated condition, but researchers are continuing to make important breakthroughs in our understanding of it. In this episode of the "Rethinking Alzheimer's Disease" podcast, we explore the new era of hope in Alzheimer's research and treatment.  Scientists and doctors are excited about the advancements in early detection and promising advances that could slow down or even prevent the disease. Dr. Sharon Cohen shares that for the first time, we can detect Alzheimer's in its earliest stages through simple blood tests, known as blood-based biomarkers. This breakthrough makes diagnosis more accessible and affordable, revolutionizing how we approach Alzheimer's care.  Additionally, artificial intelligence (AI) is being used to identify digital biomarkers, such as speech and movement patterns, further aiding in early detection. We also discuss the development of disease-slowing and prevention treatments, emphasizing the importance of clinical trials in bringing these innovations to the public. Moreover, the podcast highlights the critical need for equity and accessibility in healthcare to ensure that advancements in Alzheimer's research benefit all communities. Jason Resendez from the National Alliance for Caregiving discusses efforts to address disparities in healthcare and make new treatments more accessible.  As we conclude the Rethinking Alzheimer's Disease podcast, this episode brings messages of hope from various contributors. Thanks for your interest in Alzheimer’s and the Rethinking Alzheimer’s Disease podcast.   For links to resources and information covered in this series, visit our website at HealthUnmuted.com/resources What did you think of this episode? We’d love to hear from you. Please visit healthunmuted.com/feedback to let us know! Rethinking Alzheimer’s Disease was made possible with support from Eisai Inc. [01:41] What’s the future of Alzheimer's care? [02:41] Developments in blood-based biomarkers [05:11] AI and digital biomarkers [06:01] What are the advances in Alzheimer's treatments? [07:36] The importance of clinical trials in Alzheimer’s research [09:23] Messages of hope Disclaimer: The content provided in this podcast is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. Reliance on any information provided by this podcast or its guests is solely at your own risk. ©2024 Mission Based Media Ltd • April 2024 • AD-M2059

Alzheimer’s disease doesn’t just affect the person who is diagnosed. It affects caregivers, too. So, if you care about someone with Alzheimer’s disease, this episode is for you.  In this episode of the "Rethinking Alzheimer's Disease" podcast, we hear from Laura, who shares the emotional journey of accepting her husband Andrew's early onset Alzheimer's diagnosis. This story opens up a discussion on the realities of Alzheimer's, not just for those diagnosed, but also for their caregivers, whether they are spouses, adult children, or even teenagers.  Dr. Joel Ebuh highlights the significant health and financial impacts on caregivers, underlining the disease's broader effects beyond the people with Alzheimer’s. Katie McDonough and Jason Resendez discuss the multifaceted role of caregivers, from providing emotional support to handling logistical challenges like treatment and medical appointments. They stress the importance of preparing for the future and the strain of uncertainty on caregivers. They also discuss the importance of caregiver self-care and why it is critical that care partners have support to manage this challenging journey effectively. We share some of the organizations and resources available. The episode also touches on the stigma around Alzheimer's, the difficulty in initiating tough conversations such as taking away car keys, and the importance of advocating for both the patient and the caregiver's needs. Through personal stories from caregivers like Brandon Burke, who cared for his father diagnosed at 59, and expert advice from professionals like Dr. Mary Mittelman, this episode offers insights into coping mechanisms, the power of counseling, and the importance of community and support groups in navigating the complexities of Alzheimer's caregiving. For links to resources and information covered in this series, visit our website at HealthUnmuted.com/resources What did you think of this episode? We’d love to hear from you. Please visit healthunmuted.com/feedback to let us know! Rethinking Alzheimer’s Disease was made possible with support from Eisai Inc. [01:52] Confronting stigma and shame [02:28] How to navigate care and emotional support? [06:29] How to approach difficult conversations and adjustments? [07:48] The importance of self-care for caregivers [09:20] Utilizing community and online resources [11:59] Enjoying life and making memories Disclaimer: The content provided in this podcast is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. Reliance on any information provided by this podcast or its guests is solely at your own risk. ©2024 Mission Based Media Ltd • April 2024 • AD-M2059

Until recently, it was difficult for doctors to diagnose Alzheimer’s disease with the limited tests available. Thankfully, there are now many different options to help doctors make an accurate diagnosis of Alzheimer’s disease, even in its earliest stages.  In this episode of the "Rethinking Alzheimer's Disease" podcast, we learn about the tests that can help doctors tell whether someone is at risk of developing Alzheimer’s disease.   Dr. Sharon Cohen, who knows about Alzheimer's both as a doctor and through her own family, shares how important it is to catch the signs early. She explains the steps of figuring out if someone has Alzheimer's, starting with noticing small changes in memory or mood, to more detailed checks by doctors, and even special scans that look at brain health. She also talks about the different reasons someone might start forgetting things or acting differently, and why it's crucial to get these symptoms checked out. It's not always Alzheimer's; sometimes, other health issues could be the cause.  Until just a few years ago, treatments could only help treat symptoms, not actually slow down the disease. Now, there's hope with advances that can change the course of the disease. Dr. Cohen stresses that knowing about Alzheimer's early gives people more choices, like planning ahead, deciding on treatments, or joining studies for new medicines.  The episode wraps up by encouraging people with Alzheimer's and their families to learn more and get support from organizations and doctors. This way, they don't have to face Alzheimer's alone and can find the best way to deal with it. For links to resources and information covered in this series, visit our website at HealthUnmuted.com/resources What did you think of this episode? We’d love to hear from you. Please visit healthunmuted.com/feedback to let us know! Rethinking Alzheimer’s Disease was made possible with support from Eisai Inc. [01:49] Personal Insights from Dr. Sharon Cohen [02:31] What are the four steps to an Alzheimer's evaluation? [03:05] Step 1: Identifying early signs and symptoms [06:10] Step 2: Getting initial assessments - cognitive tests and medical history [08:19] Step 3: Referral to a neurologist and biomarker testing [11:01] Step 4: Diagnosis and management of Alzheimer’s disease [12:33] Navigating diagnosis and treatment options Disclaimer: The content provided in this podcast is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. Reliance on any information provided by this podcast or its guests is solely at your own risk. ©2024 Mission Based Media Ltd • April 2024 • AD-M2059

With approximately 500,000 new cases in the U.S. each year, and a potential 1 in 5 being misdiagnosed, our guests explain the critical role of early diagnosis in managing Alzheimer's. But how do you know when you should talk to your doctor about Alzheimer’s disease?  In this episode of the "Rethinking Alzheimer's Disease" podcast, we dive into the importance of early detection of Alzheimer's disease. Early detection can provide individuals with more treatment options and offer valuable time to plan for the future. Bob Finch, who was diagnosed with early-stage Alzheimer's, shares his personal journey. He highlights how the disease has affected his memory and daily functions, but also how he's adapting to this new chapter of his life with positivity and awareness. Experts discuss how memory problems can appear. In the context of Alzheimer's, it's essential to be vigilant, especially if there's a family history of the disease. We explain the simple cognitive tests for anyone with concerns about their memory, which can help identify issues early on.  We also talk about how hard it can be to get doctors to listen when someone is worried about their memory or thinking problems. We share ideas on how to stand up for yourself and ask to see memory experts if needed. Since Alzheimer's can cause changes in mood and behavior, not just memory, we highlight how important it is to notice these signs and talk to doctors for help and tests.  This episode really drives home how important it is to catch Alzheimer's early and what people can do if they're worried about the disease. For links to resources and information covered in this series, visit our website at HealthUnmuted.com/resources What did you think of this episode? We’d love to hear from you. Please visit healthunmuted.com/feedback to let us know! Rethinking Alzheimer’s Disease was made possible with support from Eisai Inc. [01:46] Living with early-stage Alzheimer's: Bob Finch's story [03:46] Normal forgetfulness vs. Alzheimer's symptoms [04:36] What tests can be done to measure cognitive function? [06:24] Advocating for cognitive evaluation [08:20] Recognizing the subtle signs of Alzheimer's [12:21] The value of early detection and resources Disclaimer: The content provided in this podcast is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. Reliance on any information provided by this podcast or its guests is solely at your own risk. ©2024 Mission Based Media Ltd • April 2024 • AD-M2059

Did you know that making changes to the way you live your life can lower your risk of Alzheimer’s disease by as much as 40%? In this episode, we look at how the things we do can affect our brain health. We also talk about the risks of getting Alzheimer's from the genes we inherit from our parents.  Our guests explain that Alzheimer's and dementia are partly modifiable, meaning that certain lifestyle changes can decrease the risk of developing these conditions. Our guest Kelly O'Brien, who has a family history of Alzheimer's, shares her relief after learning that genes are risk factors, but not absolute predictors of the disease.  We learn what factors put people at a higher risk for Alzheimer’s disease, and discuss strategies available to potentially reduce the risk of developing Alzheimer's. We highlight the importance of a "brain-healthy lifestyle," which includes managing risk factors such as heart disease, diabetes, and high cholesterol through diet, exercise, and social interaction. We also discuss the significance of genetic factors, like the APOE4 gene, but remind listeners that these do not guarantee the development of Alzheimer's. We highlight disparities in healthcare and how they affect Alzheimer's risk and treatment, particularly in Black and Latino communities. Efforts to address these disparities and include diverse populations in clinical trials are mentioned as critical steps toward providing equitable healthcare.  This episode underscores the importance of early detection and proactive health management. Despite the genetic risks and the inevitability of aging, individuals can take significant steps to protect their brain health and possibly reduce their risk of Alzheimer's. Tune in to learn how to adopt a healthier lifestyle, and seek medical advice to navigate the risks for Alzheimer's. For links to resources and information covered in this series, visit our website at HealthUnmuted.com/resources What did you think of this episode? We’d love to hear from you. Please visit healthunmuted.com/feedback to let us know! Rethinking Alzheimer’s Disease was made possible with support from Eisai Inc. [02:07] The role of genes like APOE4 in Alzheimer's disease [03:56] How to detect APOE4 through a genetic test [04:57] What is the benefit of having a genetic test? [05:48] What role does age and gender have in developing Alzheimer’s disease?  [07:10] What are the modifiable risk factors for Alzheimer's? [09:39] Healthcare disparities and Alzheimer's risk [11:34] What is the role of race and ethnicity in developing Alzheimer’s? Disclaimer: The content provided in this podcast is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. Reliance on any information provided by this podcast or its guests is solely at your own risk. ©2024 Mission Based Media Ltd • April 2024 • AD-M2059

Learn about the differences between Alzheimer's and dementia, and how Alzheimer's disease progresses. We talk about why catching the disease early can make a big difference. Dr. Sharon Cohen and Dr. Yaakov Stern walk us through the stages of Alzheimer's disease, from when there are no symptoms to when memory issues start to show. They explain the stages of Alzheimer’s and how it develops over time. We also hear from Kelly, who explains her personal experiences and concerns about developing Alzheimer’s, and what she does about it.  For links to resources and information covered in this series, visit our website at HealthUnmuted.com/resources What did you think of this episode? We’d love to hear from you. Please visit healthunmuted.com/feedback to let us know! Rethinking Alzheimer’s Disease was made possible with support from Eisai Inc. [00:03:10] What's the difference between Alzheimer's disease and dementia? [00:07:04] When does Alzheimer’s begin to develop? [00:09:08] What is Mild Cognitive Impairment (MCI)? [00:10:36] What is subjective cognitive decline? [00:11:59] What is preclinical Alzheimer's disease? [00:13:13] Why is it important to detect Alzheimer’s disease early? Disclaimer: The content provided in this podcast is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. Reliance on any information provided by this podcast or its guests is solely at your own risk. ©2024 Mission Based Media Ltd • April 2024 • AD-M2059

In this episode of Solving Healthcare, hosted by Dr. K, we are joined by Joe Blomeley. Joe is the Executive Vice President of Green Shield, an innovative health services organization. Today Joe shares insights into Green Shield's commitment to enhancing healthcare accessibility. From mental health to primary care, diabetes, and hypertension management. Discover how Green Shield is revolutionizing healthcare with virtual and in-person solutions. Tune in to explore the array of services designed to connect you with top-notch pharmacists and elevate your healthcare experience. Green Shield is not just changing the game – it's empowering you to take charge of your well-being. Don't miss this transformative discussion!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”OFFERSSolving 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.Thank you 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

In the 1990s, a chain email circulated around the series-of-tubes we called the internet, suggesting that aluminum-containing antiperspirants clogged your sweat pores, thus disallowing your body to “purge itself of toxins”, and those "toxins" would accumulate in your axillary lymph nodes, and increase your risk of breast cancer. Yikes. Predating the "antiperspirant-will-give-you-breast-cancer" chain email scare, animal studies in the 1960s suggested a link between aluminum in antiperspirants (which were just becoming popular in postwar America) and Alzheimer's disease. These rabbit studies showed brain neurotoxic effects when the animals were exposed to very high levels of aluminum. In the past several decades, researchers have investigated whether these loose correlations/hypotheses held any water (spoiler: they don't). In today's episode, Your Doctor Friends want to debunk and demystify the data around the potential "risks' around aluminum-containing antiperspirants! Should you ditch the standard roll-on? Switch to a "natural" alternative? OR.. is this all just a case of "all stink and no fire"?? Sources for today's episode include: The NIH National Cancer Institute's fact sheet page on antiperspirants and breast cancer. A 2017 review in Deutsches Arzteblatt International journal titled "The Health Effects of Aluminum Exposure." A 2019 comprehensive review on sweat gland function by Lindsay B. Baker PhD, director of the Gatorade Sport Science Institute. A Scientific American article titled "Fact or Fiction: Antiperspirants Do More Than Block Sweat". A 2021 Canadian study published in NeuroToxicology investigating association between aluminum in drinking water and risk of Alzheimer's disease risk. A Healthline article from 2022 titled "Is There a Link Between Aluminum and Alzheimer's?". A 2021 NYT article titled "Are Natural Deodorants Really Better For You?". AND FINALLY- a 2017 article from The World Textile Conference called "A novel washing algorithm for underarm stain removal" - which was the closest thing to scientific data explaining WHAT MAKES YELLOW ARMPIT STAINS! Thanks for tuning in, folks! Please sign up for our "PULSE CHECK" monthly newsletter! Signup is easy, right on our website page, and we PROMISE we will not spam you! We just want to send you cool articles, videos and thoughts :) For more episodes, limited edition merch, or to become a Friend of Your Doctor Friends (and more), follow this link!   Find us at: Website: yourdoctorfriendspodcast.com  Email: [email protected]  Connect with us: @your_doctor_friends (IG) Send/DM us a voice memo/question and we might play it on the show! @yourdoctorfriendspodcast1013 (YouTube) @JeremyAllandMD (IG, FB, Twitter) @JuliaBrueneMD (IG) @HealthPodNet (IG)

2024-04-05 Hosts Craig Lipset, Amir Kalali, and Jane Myles were joined by several members of the research community for a robust discussion about how to find evidence of impact, our efforts to make it available in the DTRA Library, and ways we can continue working to find this evidence to drive adoption of DCTs.The DTRA Library can be accessed here and is available to all. We are asking for you to make submissions of additional case studies, white papers, articles, and more so we can continue to grow the library for all.Follow the Decentralized Trials & Research Alliance (DTRA) on LinkedIn and Twitter. Learn more about Membership and our work at www.dtra.org.

TOGETHER WE ARE STRONGER  - 1,400 strong, thank you Jess & team. https://curesyngap1.org/blog/syngap1-census-2024-update-61-in-q1-2024-total-1400/  - Stoke webinar: one of the most important considerations for deciding which disease to work on was, “…how strong is the patient advocacy group?”   - Stoke CMO Barry Ticho, MD, PhD, FACC during webinar 4/2/24 to discuss findings of STK-001   WELCOME AND CONNECT  - New parents are coming fast, reach out to them, tell them how much hope to have.  - Connect, connect, connect.   - San Diego next week: https://curesyngap1.org/resources/movies/jaxon/   - Hope https://curesyngap1.org/blog/my-syngap1-drive-a-thon-hope4thecure/ - TU to Emily Barnes who is at FasterCures meeting today in Boston, see #S10e98 to see my thoughts about this workshop https://www.youtube.com/watch?v=iOLjUdVUtqo   TEAM IS GROWING  BOARD - https://www.eurekalert.org/news-releases/1038978  CSO - https://www.eurekalert.org/news-releases/1040061  COO - You?   PRESS  - UK https://www.channel4.com/news/govt-send-funding-boost-still-billions-short-says-tory-mp-with-affected-family/  - GA https://www.gpb.org/news/2024/04/03/80-of-rare-diseases-are-genetic-thats-why-whole-genome-sequencing-can-help/    What does my genetic report mean?  We wrote a blog, but as I’ve had this conversation a few dozen times, my answer is simpler now.  Is it missense or is it truncating?  If missense, do more research, if truncating, it is in the first 4 exons (p. Address of 129 or lower). Who else has it?  Look on ClinVar and call SRF. Blog: https://curesyngap1.org/blog/understanding-your-genetic-report-with-syngap1-a-rare-disease/   STUDIES https://curesyngap1.org/blog/my-syngap1-drive-a-thon-hope4thecure/  CHOP: [email protected]  Adults:  - Press Release: https://www.eurekalert.org/news-releases/1040062  - Study Info:  https://drive.google.com/file/d/1tOdodcV7E5ROOHWyLn8a48x1WNBOr-U2/view  QOL: https://Syngap.Fund/QOL24 39 and counting.   #Sprint4Syngap 2024 Total: $168,572 from 347 people Tavilla: $126,385 from 62 Big thanks to them and all teams especially those already over $1k, Phoebe, Kaia, Louie, Kiera, Theo, Hadley & Gracyn. https://curesyngap1.org/events/featured/sprint4syngap-2024/ https://givebutter.com/ALjJXJ   REPURPOSING  - NAL, blog coming.  - Ravicti, enrolled, and blog on Butyrate coming.  - Nortriptyline, has been game changing, discussing a larger trial.   REFLECTIONS  - Family Medical Leave Act #FMLA https://www.dol.gov/general/topic/benefits-leave/fmla  - Homeschooling… again, avoid the kneejerk.  See #S10e64 https://www.youtube.com/watch?v=01uhSjxGgGE    - Tony update.  Grateful and grieving.   SOCIAL MATTERS 967 Subscribers on YouTube.  https://www.youtube.com/@CureSYNGAP1  3,483 Subscribers on LinkedIn.  https://www.linkedin.com/company/18940628/admin/feed/posts/ Socials matters so we can find more people, like this: https://curesyngap1.org/blog/an-emotional-journey-begins-after-a-syngap1-diagnosis/    Podcasts, give all of these a five star review! SRF Channel - https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917   Episode 138 of #Syngap10 - April 4, 2024 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1

When you hear the words Alzheimer's disease, what do you think of? The truth is, the picture most of us have of the disease is incomplete. Alzheimer's disease doesn't start when someone starts to lose their memory. It actually starts years – sometimes decades – earlier.  The Rethinking Alzheimer's Disease Podcast is an engaging, narrative-style podcast miniseries for those curious or motivated to learn about Alzheimer’s disease. Perhaps you have a family member with Alzheimer’s disease, or care for someone with Alzheimer’s disease. Perhaps you consider yourself or your loved ones at risk for Alzheimer’s disease and want to hear more about the journey and actions you can take.  Told by people with lived experience of Alzheimer's disease, as well as caregivers and health experts, the Rethinking Alzheimer's Disease Podcast answers common questions about Alzheimer's disease, including: what Alzheimer's disease is, how it starts, what signs to look out for, and most importantly, how you can take action to reduce your risk of Alzheimer’s disease, or slow its progression. Download and listen to our series to learn more about Alzheimer's disease, gain confidence in dealing with it, and find hope in the insights and knowledge of others. Together, we can start Rethinking Alzheimer's disease and make a positive impact in the fight against this complex condition. For links to resources and information covered in this series, visit our website at HealthUnmuted.com/resources Rethinking Alzheimer’s Disease was made possible with support from Eisai Inc. Disclaimer: The content provided in this podcast is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. Reliance on any information provided by this podcast or its guests is solely at your own risk. ©2024 Mission Based Media Ltd • April 2024 • AD-M2059