Patient Education Podcasts

ONCE UPON A GENE - EPISODE 199 Navigating as a Rare Mom - Expert Insights into Special Needs Financial Planning with Mary McDirmid from Special Abilities Network Mary McDirmid is a rare mom and Chief Inclusion Officer at Special Abilities Network. She has a passion for advocating for families like ours— families with children who have disabilities and rare diseases. She's here to talk us through the uncomfortable topic of financial and future planning for our rare families.  EPISODE HIGHLIGHTS How do parents approach planning for their children's future when things feel so uncertain? If you don't have the capacity to think about it, the first thing to do is to figure out what you can do to create space and capacity. Triage anything that's causing a lot of stress so you can move from caregiver mode to parent mode.  What's the importance of planning when you have a child with disabilities or rare disease? The importance is that if a child is on any type of state or federal benefit, we want to ensure they keep those benefits. When they turn 18, they're legally an adult and they can only have a certain amount of assets in their name. There's only a couple places we can put money to help them save and not have funds count against their asset limits. It's important to also be able to supplement financial care when you're no longer around. The importance is keeping your child benefit-eligible and to ensure your child is cared for.  What is your advice for parents who don't have the financial resources to save for their child's future? Apply for state benefits and leverage those resources to find funds. Think about other resources such as family members who can contribute. Examine how your family is spending money  and reflect on your personal spending habits to see if there's somewhere to save.   How can families advocate for change around policy and providing better care for our kids? If you're up for the fight, you have the time, and you have the capacity, think about what you want to achieve, be clear in your ask and be prepared to follow up. If you're considering taking something on, ask yourself if the project benefits from your special skill or expertise, if it serves the community you represent, and what / who you want to be held accountable to.  LINKS & RESOURCES MENTIONED Dante Labs https://us.dantelabs.com/ Special Abilities Network https://specialabilitiesnetwork.com/ TSC Alliance https://www.tscalliance.org/ State Disability Resource Guides https://truenorthdisabilityplanning.com/idd-roadmaps TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene 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/ Interested in advertising on Once Upon a Gene? Email ad[email protected] for more information!

Ever wonder about what it means to "feel safe"? If you're curious about what it means to become regulated and create regulation for you and children with whom you work, this episode is for you! Regardless of your profession, if you work with children and families, felt safety and regulation are important aspects of your practice. Learn about the science of safety and what it means to regulate! EMILY READ DANIELS, M.Ed., MBA, NCC, SEP™ in trainingEmily Read Daniels is the author and creator of The Regulated Classroom©, a former school counselor, and a proud soccer mum. Daniels is an internationally recognized trauma specialist and trainer in the trauma-informed school movement and has served thousands through in-person and virtual professional development training, workshops, conferences, webinars, and keynote addresses.  Daniels and her work have been featured in the Associated Press, Fox News, ABC News, Los Angeles Times, and NPR.   RESOURCES Dr. Amy's Newsletter Learning Collaborative - The ConnectED Collab Invitation Dr. Amy Youtube FREE DOWNLOADS Top 10 Guiding Principles When Working with Children & Families Start Creating Boundaries Handout & Script Finding Calm to Prevent Overwhelm Don’t Forget! Follow Dr. Amy on LinkedIn, Facebook, and Instagram For more information visit www.doctoramyllc.com 

In this episode of "When Life Gives You Parkinson's," Larry and Rebecca dive into Larry's upcoming Deep Brain Stimulation (DBS) surgery. They introduce Dr. Chris Honey, the neurosurgeon who will perform the procedure the brain surgeon. Dr. Honey breaks down what to expect and the possible risks of DBS, stressing the importance of picking the right surgeon and keeping a positive mindset. After the surgery, the plan is to use the DBS device to replicate Larry's best moments on medication, with the hope of eventually cutting down or even ditching the meds. The episode also brings in Tim Hague Sr., who shares his experience with the medication challenge, underlining just how much Levodopa (medication) can make a world of difference for folks dealing with Parkinson's. The podcast wraps up with a chat about making essential medications accessible worldwide and some cool facts about DBS. Check out these videos of Larry's OFF CHALLENGE My Eye Opening DBS "Off Challenge" https://youtu.be/GrlCmrHbtb0?si=PGRaESoYWMt4L5Uc The Power of Levodopa https://youtu.be/Mg91r2hT6p4?si=xFgVhnCSiRX8haLZ Thank You to: Neurosurgeon Dr. Christopher Honey www.DrHoney.com Nurse Nancy at the Vancouver Coastal Health DBS Clinic   Tim Hauge Sr. www.TimSr.ca founder of www.uturnparkinsons.org www.pdavengers.com TV Show House Heel & Toe Films Shore Z Productions Bad Hat Harry Productions Moratim Produktions NBC Universal Television (2004-2007) Universal Media Studios (UMS) (2007) The Brain Surgeon - That Mitchell & Webb Look , Series 3 - BBC Two MAIL Larry and Rebecca: [email protected] Have a topic or questions that you would like Larry & Rebecca to address on a future episode? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow us, Larry & Rebecca Gifford  Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Twitter: @ParkinsonsPod Thanks to Curiouscast Dila Velazquez – Story Producer Greg Schott – Sound Design Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Thanks also to    PD Avengers – We are building a global alliance to end Parkinson’s. Join us.    

Angela Forfia from ADCES and Sarah Ann Piper from Emory Centers joined us live at ADCES23 to talk about an exciting new partnership on a grant offered by the Centers for Disease Control and Prevention. The grant will focus on advancing access to diabetes education and prevention resources for those in underserved communities. Hear as Angela and Sarah explain how this will come to life over the next 5 years.

Did you know AI can reduce echocardiography wait times from 12 months to just 6 weeks? Learn more on the latest episode of the AWS Health Innovation Podcast. We've compiled insights from 10 leading startups for a 360-degree tour of Health AI innovation. Covering a broad range of use cases, from genomics to dentistry and musculoskeletal to cardiology, this is a must listen for anyone interested in how AI can improve healthcare.

Music Credits: Title: Storybook Author: Scott Holmes https://freemusicarchive.org/music/Scott_Holmes/inspiring-background-music Source: Free Music Archive https://freemusicarchive.org/music/Scott_Holmes/inspiring-background-music Licence: CC BY-NC https://creativecommons.org/licenses/by-nc/4.0/

In this episode, we revisit a classic conversation with our guest, Ted Naiman, a board-certified Family Medicine physician from a leading medical center in Seattle. Ted shares expert advice on a protein-focused diet and its role in enhancing overall nutrition, including insights on caloric intake, food habits, and more!

Discussion of ADHD is EVERYWHERE in the news and social media. Often we hear patients, friends, and family members stating “I saw a post on FB/Instagram/Twitter/TikTok about ADHD that resonated with me, should I get tested?” While many people experience periods of inattention, unfocused motor activity, and impulsivity, those with ADHD experience these symptoms to a much greater degree, and these behaviors can often interfere with their social lives, working lives, and general mental health. Depending on your age and many other social factors, screening and evaluation for ADHD may have passed you over during your young, formative years. Thankfully, meaningful research exists to provide helpful data on how to diagnose and manage this condition!So let’s learn more, shall we? Thankfully we have a wonderful expert guest in the field of Neuropsychology to educate us today. Welcome, Leslie Guidotti Breting, Ph.D., ABPPDr. Leslie Guidotti Breting is a board-certified, clinical neuropsychologist and director of Neuropsychology at NorthShore University Health System where she has practiced since 2010. She serves at a national level on the Board of Directors for the American Board of Clinical Neuropsychology and is the Chair of the Student Affairs Committee for the American Academy of Clinical Neuropsychology. She has been engaged in clinical research, publishing extensively on the topics of ADHD, epilepsy, mTBI, and concussion. She conducts neuropsychological evaluations for adults, including those concerned about ADHD. She has also evaluated professional and collegiate athletes for therapeutic use exemption for stimulants related to treatment for ADHD.The key moments in this episode include:00:01:15 - Prevalence of ADHD, 00:02:39 - Increase in ADHD Diagnosis Rates? 00:05:07 - What is a Neuropsychologist? 00:16:20 - Genetics and Heritability of ADHD 00:17:22 - Screening for ADHD 00:19:08 - Overdiagnosis of ADHD? 00:21:45 - Diagnosing ADHD in Young Children 00:23:17 - Challenges in Diagnosing ADHD 00:31:26 - ADHD and Autism Spectrum Disorder Co-Occurrence 00:32:10 - Symptoms of ADHD in Adults00:35:23 - Pathophysiology of ADHD 00:36:50 - Executive Functioning and ADHD00:49:19 - Medication and Treatment Options00:58:16 - "Growing out" of ADHD 01:02:29 - Algorithm of Probability for ADHD Diagnosis - new research01:03:03 - No Blood TestsRESOURCES FOR TODAY'S EPISODE:CHADD- Children and Adults with ADHD website.American Academy of Child and Adult Psychiatry ADHD Resource Center. Find a board-certified Clinical Neuropsychologist through the American Academy of Clinical Neuropsychology website.Dr. Leslie Guidotti-Breting's professional NorthShore University page. For more episodes, limited edition merch, or to become a Friend of Your Doctor Friends (and more), follow this link! This includes the famous "Advice from the last generation of doctors that inhaled lead" shirt that Julie wears in this episode :)Also, CHECK OUT AMAZING HEALTH PODCASTS on

Sydney & Brett Stelmaszek are heavily involved in the SRF community. Sydney is on the BOD, is a patient advocate, and coordinates our connection with Children’s Hospital of Philadelphia (CHOP). Brett is the driving force behind Cannonball for the Cure (CFTC), an annual fundraiser where SYNGAP1 parents drive cross country live-streaming the entire journey to raise awareness of SYNGAP1. This episode touches on their involvement with SRF as well as raising their son Emmitt, diagnosed with SYNGAP1 while living in South Africa. Their story of excessive seizures, aggression, hope, and love while caring for Emmitt and his two brothers is at times heart-breaking, but always heartwarming. Emmitt’s Warrior Story Eating with Emmitt - Blog Post Flying & Seizing from Africa to Florida - Emmitt's Story Sydney’s SRF Bio Follow Sydney & Brett: Instagram - @UFD_Tech Twitter - @SydneyStel & @UFDTech Facebook - Sydney YouTube - @UFDTech YouTube - Our Syngap Journey More links: Cannonball for the Cure Natural History Study at CHOP SPECIAL WEBINAR: $25M Gift to ENDD for SYNGAP1 and STXBP1 MDBR - Blog Post by Sydney 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 018 SYNGAP1 Stories, September 19, 2023 #SYNGAP1StoriesEmmitt #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp18 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #Agression #Behavior #Cannonball #CFTC #UFD

Congrats to… - Allen Burke on his airborne fundraiser for SRF UK - Aaron and Monica Harding on their Military Lifegiver Podcast (start at 7 minutes) - Beacon on their FDA approval on the Sleep Headband Dream 3S - Soiree 8/26 - $300K net raised by Suzanne   - Katrien on the ILAE #SYNGAP10 #S10e115    Webinar coming up:   Behaviour, Cognition and Sensory Processing in People with SYNGAP1   Register: https://us02web.zoom.us/webinar/register/WN_tXX0ZKcgQqm9heZgf0AfDg   Sept 28 @ 9am PT/ 5pm GMT     Still a classic: Mike to FDA on SYNGAP1 For ORCA https://www.youtube.com/watch?v=AObE7NhSlmg&t=447s    Events to mention in SYNGAP10  - Global Genes, DEI - 9/18 - 9/23 - Vicky and Mike  - 2nd Scientific Conference in Spanish (virtual) 9/23 - Cannonball 10/4-10/6; Brett, Peter, Monica & Reece listen to Stories Episode 12 MH!  - Scramble 10/7 Julie Miles https://syngap.fund/scramble   - Park City Epilepsy Mtg 10/15 - 10/17; Mike, JR  - Gala 10/21 Nancy Kessler https://syngap.fund/CLG3   - Conference 11/30 & 12/1 + Sea World or Disney 12/2   Conference - Sign up by Halloween - We need head counts.  - Registration link: https://Syngap.Fund/Orlando    - Hotels: https://Syngap.Fund/2023hotel   - Shirts: https://www.bonfire.com/srf-syngap1-conference-2023/  Share your time and blood too! - Sign up for ciitizen! - Sign up for CHOP!  - Volunteer! Donate to the biorepository in OH or IL: - Sept 22, Liberty Township, OH: IRF2BPL Foundation (Home 2 Suites, 7145 Liberty Centre Drive, Liberty Township, OH 45069) - Sept 29, Chicago, IL: KCNQ2 Cure Alliance Conference, September 29th 2023 (Hilton Hotel Chicago 300 E Ohio St, Chicago, IL 60611    This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here  - https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917 Episode 116 of #Syngap10 - September 18, 2023 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat

Katrien Deckers reflects on European 🇪🇺 Epilepsy Conference - #S10e115 (Volume up)   Katrien: https://www.syngapresearchfund.org/team/katrien-deckers-chairperson    Dr. Eschermann's Slides  https://www.patre.info/2023/09/04/presentation-at-iec-2023/ EURAS Project Press Release https://euras-project.eu/   Register for the SRF Conference, it’s going to be fabulous. - Registration link: https://Syngap.Fund/Orlando    - Hotels ASAP: https://Syngap.Fund/2023hotel    - Merch https://www.bonfire.com/srf-syngap1-conference-2023/  Volunteer with SRF!  - https://www.syngapresearchfund.org/volunteer-with-syngap-research-fund This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 - https://www.syngapresearchfund.org/syngap10-podcastApple podcasts:  - https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818 Episode 115 of #Syngap10 - September 17, 2023 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat  

In Episode 60 of the Know Stroke Podcast we sat down with the esteemed Dr. Joseph Broderick. Guest Bio: Joseph Broderick, MD, a distinguished stroke expert and neurologist, has been a crucial part of UC Physicians since 1987. In 1996, he became a professor of Neurology at the University of Cincinnati, and from 2000-2014, held the Albert Barnes Voorheis Chair for the Department of Neurology at the UC College of Medicine. From 2014 through the present, he has served as the Director of the UC Gardner Neuroscience Institute.   Contributing to medical care within the broader community as a founding member of the UC Stroke team, he has served as a courtesy staff member at 20 regional hospitals during the past 30 years and as a full staff member at all UC Health hospitals. Currently, he is the principal investigator for the National Coordinating Center for StrokeNET, an NIH-funded network of 25 regional stroke centers and 500 hospitals nationwide focusing on clinical trials and stroke care as well the principal investigator of two sizeable global stroke trials. Without a doubt, he has played a pivotal role in UCMC and UC being one of the leading Comprehensive Stroke Centers in the world. Show Notes: Part 1: Inspiration and Research Segment 1: What Drives Him Dr. Broderick's inspiration for becoming a stroke researcher and clinician. His continued motivation to improve stroke treatment and patient outcomes. Segment 2: Past & Present Research Insights into Dr. Broderick's remarkable career in stroke research. Exploration of areas within acute stroke that warrant further research. Segment 3: Intracerebral Hemorrhage Treatment Definition and significance of intracerebral hemorrhage. Details about the FASTEST trial and its objectives. The role of the Mobile Stroke Unit in advancing research. Part 2: StrokeNet and the Future of Stroke Care Segment 4: StrokeNet's Origin and Operations The inception of StrokeNet and its operational framework. Examples of clinical trials conducted through StrokeNet. Enhancing patient involvement in clinical research through StrokeNet. Segment 5: Challenges in Stroke Clinical Trials Dr. Broderick's insights on the biggest barriers in conducting clinical trials for stroke. Segment 6: Redesigning Stroke Care Dr. Broderick's vision for redesigning the stroke care pathway if given a magic wand. Show Credits: Music intro credit to Jake Dansereau. Our intro welcome is the voice of Caroline Goggin, a stroke survivor and our first podcast guest! Please listen to her inspiring story on Episode 2 of the podcast. Be sure to give the show a like and share, & follow and connect with us on social or contact us to support us as a show sponsor or become a guest on the Know Stroke Podcast. Visit website to to learn more: https://www.knowstrokepod.com/ Connect with Us and Share our Show on Social: Website | Linkedin | Twitter | YouTube | Facebook

ONCE UPON A GENE - EPISODE 198 Advocating with Heart - Striking the Balance Between Medical Insights and Personal Narratives - A Tribute to Valerie Marie with RING14 Co-Founder Yssa Dean DeWoody Yssa Dean DeWoody is an incredible advocate and mom, sharing her journey through the intricate world of rare disease advocacy. She unveils the concept of transitioning between the Valerie side, where medical realities are confronted, and the Marie side, where the personal essence of her daughter shines.  EPISODE HIGHLIGHTS Can you share about your connection to the rare disease world? Our journey in the rare disease world started about 18 years ago with the birth of our third daughter, Valerie Marie. At three months old, she started having seizures and she was quickly diagnosed with RING14 Chromosome. We had the opportunity to attend an international family conference and it set us on a path to what it was like to be part of the rare disease community. I was inspired by the research and the idea that I could contribute to the community.  Can you tell us about Valerie Marie and why you're so intentional about differentiating between Valerie and Marie separately? My daughter's full name is Valerie Marie. My family refers to my daughter as Marie. Doctors always referred to her as Valerie. In time, it personified different aspects of my daughter where Marie was my daughter and her personality, her likes and dislikes. Valerie took on the more clinical presentation of her symptoms. If someone called my daughter Valerie, I knew they knew her in a medical sense and I had to create value around her by informing them who she was as a person.  What is your advice for families who want to share their stories effectively with a balance of objectivity and emotion? Whether it's at an IEP meeting at your child's school, a fundraising talk, or a speech at a large conference, it's best to start in the emotional realm with a hook that draws people in. Start with a personal story that invites the audience into your world in a personal way. Transition into a more scripted conversation guided by organized thoughts, clear ideas and a clear ask. It helps to have a clear outline in advance and know what you want out of it.  Can you share why you donated Valerie's brain to research and what the potential impact is on the rare disease community? At a research workshop, several experts emphasized the importance of brain donation in the event of a tragedy. There are so many critical questions with RING Chromosomes that might be answered from Valerie's brain donation. As a leader of the foundation with a heart for research, we chose to honor her life and continue her legacy in a way that could impact the community and inform research strategies.  LINKS & RESOURCES MENTIONED Dante Labs https://us.dantelabs.com/ RING14 USA https://ring14usa.com/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene 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/ Interested in advertising on Once Upon a Gene? Email ad[email protected] for more information!

Join Dr. Amy as she interviews 4 children, kindergarten through second grade, all about what creates safety and belonging in school. You'll hear from Yves, Dean, Charlotte, & Mac - all experts in their own right. Be patient with my friends - it takes them a while for them to find their voices; but the wisdom they share about being known & insights on friendship are beautiful. RESOURCES Dr. Amy's Newsletter Learning Collaborative - The ConnectED Collab Invitation Dr. Amy Youtube FREE DOWNLOADS Top 10 Guiding Principles When Working with Children & Families Start Creating Boundaries Handout & Script Finding Calm to Prevent Overwhelm Don’t Forget! Follow Dr. Amy on TikTok, LinkedIn, Facebook, and Instagram For more information visit www.doctoramyllc.com 

Join hosts Marianne Sciucco and Christy Byrne Yates on the Untangling Alzheimer's & Dementia podcast as they dive into a lively conversation with AlzAuthor Tami Anastasia about the challenges caregivers face in supporting individuals with dementia. Tami's book, Essential Strategies for Dementia Care: Learning to P.A.C.E. Yourself, offers guidance for caregivers on various topics, from communication techniques to managing emotions like anger and grief. The conversation begins with Tami providing insights on motivating individuals with dementia to engage in activities. She emphasizes the importance of understanding that all behavior is a form of communication and highlights the need to truly listen to the person with dementia. Tami also explores the concept of grief and loss in dementia care, emphasizing the need to connect with the person rather than correcting them. In this episode, you will be able to: Gain enlightenment on the unvoiced hurdles that caregivers of dementia patients face.Kickstart your efficient caregiving journey with the assistance of the P.A.C.E. model.Determine how to strike the delicate balance between personal self-care and caretaking for your loved ones with dementia.Learn techniques to reinforce your confidence and self-esteem in your role as a caregiver.Develop a deeper understanding of the emotional intricacies involved in dementia care and how to manage them. More about Tami Tami Anastasia is a reliable confidante to countless family caregivers, guiding them through the complexities of dementia care. Drawing strength from her personal experiences—especially her encounters with her grandmother's dementia diagnosis—she's dedicated to easing the journey for caregivers. Besides running a bustling private practice in the greater Bay Area of California, she inked her experiences and wisdom in the form of her practical book, Dementia Caregiver: Learning to P.A.C.E. Yourself.  Connect with Tami Website LinkedIn Facebook X (Twitter) Instagram TikTok 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

In this episode, we are joined by a special guest, Niki Papaioannou, the founder of 'Niki Inc,' a Toronto-based publicity firm. Niki sits with Dr. K to discuss his newly released book, 'Unapologetic Leadership'. 'Unapologetic Leadership' offers a refreshing perspective on leadership that challenges the conventional norms. Drawing from his extensive experience as an ICU physician, Dr. K argues that authentic leadership should be rooted in values rather than fear.  Join us for an engaging discussion as we break down the fascinating insights shared by Dr. K in his remarkable release, 'Unapologetic Leadership.' Don't miss out!

Let’s take a little walk down Vaccine Memory Lane.  Do you remember how it felt when you got access to the first Covid vaccine in late 2020/early 2021? Julie remembers DRESSING UP to go and get her vaccine. (She wore a turkey hat with little Santa hats on its feet since it was close to the holidays).Now, do you remember last winter’s TRIPLEDEMIC??How can we avoid the same situation this year? What are the options and recommendations for folks for prevention of flu, COVID, and RSV?Today we have invited our doctor friend and expert in Infectious Diseases to explain the viral landscape in the US in the autumn of 2023. After today’s episode you will feel empowered to make your personal vaccine choices based on your risk factors, epidemiologic evidence, and straight-from-the-source data-backed recommendations from CHICAGO’S FAUCI HIMSELF!!Welcome, Dr. Rob Citronberg!You may remember Dr. Citronberg from our previous episode about Monkeypox, Covid and Polio posted almost exactly a year ago! Dr. Citronberg is the Executive Medical Director of Infectious Disease and Prevention at Advocate Aurora HealthMD from University of Connecticut, IM Residency and ID Fellowship at RUSHTrusted news source as Infectious Disease expert (catch him regularly on ABC Chicago!)Julie was afraid of him when she was a resident (til she did an ID rotation then they were besties)"Get your COVID vaccine when you can, don't worry too much about timing it perfectly. It's a step towards getting back to a normal life, protecting ourselves and our loved ones." - Rob Citronberg, MDIn this episode, you will be able to:Find out how vaccinations stand as the frontline defense against COVID-19, Flu, and RSV.Understand the significance of safeguarding pregnant people and infants through planned vaccinations.Find out how to create memorable and safe holiday gatherings during pandemic times.Learn to access the most credible and valuable health and public information from respected medical experts. Decide which vaccines this fall/winter are most important for you based on your individual risk factors. Determine whether masking in public makes sense for you.Key moments in this episode include:00:00:00 - Introduction, 00:02:16 - Vaccine Landscape, 00:07:43 - Variants and Vaccines, 00:10:10 - Impact of Prior Pandemic Restrictions, 00:11:48 - RSV Overview, 00:12:42 - Vaccine Recommendations, 00:14:22 - The Importance of COVID-19 Vaccines, 00:16:01 - Transition to Annual COVID Shots vs "Boosters", 00:17:46 - Targeting High-Risk Populations, 00:22:52 - RSV Vaccines for Infants and Pregnant People, 00:28:07 - Challenges with Vaccination Uptake, 00:29:17 - Monoclonal Antibodies as a Game Changer, 00:32:14 - Preventing Serious Illnesses in Newborns, 00:34:13 - Continued Interest in Vaccine Research, 00:37:06 - School Safety and Recommendations, 00:42:52 - "Work Culture and Changing Attitudes", 00:43:48 - "Changing Attitudes in the Medical Field", 00:45:20 - "Shift towards Work-Life Balance", 00:46:08 - "Handling Holiday Plans during the Pandemic", 00:51:17 - "Effects of Masks and Mask Mandates", 00:56:50 - Importance of Listening to Credentialed Experts, 00:57:29 - Recommended Source: Your Local Epidemiologist, 00:58:15 - Keeping a Low Profile, 00:59:18 - Call to Action: Share the Podcast, 01:00:15 - Importance of Vaccination, Dr. Citronberg recommends the following resources if you want to learn more about vaccines this fall:The CDC website, specifically...

Show Notes Victoria Arteaga is the Director of Fondo de Investigación SYNGAP & SYNGAP1 Mom to Amelia. She works endlessly to help the SYNGAP1 community in Latin America & across the globe, attending and presenting at multiple conferences annually. Vicky discusses Amelia’s progress, the joy she brings to the family, a new service dog, SRF’s latest podcast Café SYNGAP1 in Spanish, and the upcoming Second SYNGAP1 Scientific Conference, also in Spanish. Amelia’s Warrior Story⁠ & Instagram Post Vicky’s Bio⁠ Follow Vicky: Instagram - @vickyart78 Instagram Fondo - @syngapamericalatina Twitter - @VickyAArteaga More links: Gomez Family Video (Spanish w/ English subtitles) Brain & Life Interview - Spanish & English Café SYNGAP1 Segundo Congreso Científico Syngap1 en Español 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 017 SYNGAP1 Stories, September 12, 2023 #SYNGAP1StoriesAmelia #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp017 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Therapy #Family #Water #ServiceDog

2023-09-08 Join us to hear about all things DTRA Circles. These functional collaboration groups were built around areas of interest for our members, such as Diversity, Data Management, Patient Voice, and more. Sarah McKeown-Cannon and Deena Bernstein joined us for the conversation.Follow the Decentralized Trials & Research Alliance (DTRA) on LinkedIn and Twitter. Learn more about Membership and our work at www.dtra.org.

Video - Thank you Alexis - https://youtu.be/xPbE0vg33eU - Dads in denial! Could be a good t-shirt.Invitae story - https://blog.invitae.com/real-stories-naya-e-c37930c2e83    Pods - Review! Five stars! - Channel :https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917 - S10: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1/id1560389818  - Stories: https://podcasts.apple.com/us/podcast/syngap1-stories/id1667705687  - Cafe SYNGAP1:: https://podcasts.apple.com/us/podcast/caf%C3%A9-syngap1/id1705809525   CHOP - Sign up! https://drive.google.com/file/d/1eCVGmQ5b3RfL0ZiMpjoWIgVpFaSfEVOh/view?usp=drivesdk   ILAE Dublin was a great success -  - Ana’s Tweet: https://twitter.com/CNSdrughunter/status/1699754342125847023 - Ana’s Webinar: https://www.syngapresearchfund.org/webinars/treatments-in-development-for-epilepsy-syndromes-opportunities-for-syngap1   Warriors - Sign up - https://www.syngapresearchfund.org/syngap-warrior/addison   Conference - Sign up by Halloween - We need head counts.  - Registration link: https://Syngap.Fund/Orlando    - Hotels ASAP: https://Syngap.Fund/2023hotel   - Shirts https://www.bonfire.com/srf-syngap1-conference-2023/ Presentations  - Pharma - To follow https://syngap.fund/23    - UCB-Digital Health - Agenda - https://med.stanford.edu/ucbcollaborative/events/2023-digital-health-symposium.html#agenda - Sign up for Ciitizen. https://www.ciitizen.com/SYNGAP1/SRF/   - It matters, this data is bringing data to companies & making SYNGAP1 more attractive.  SHARE YOUR DATA.  - If you have issues, email Virginie and Mequel.    CANNONBALL 3 is coming!  October 4-6.  Takeover coming soon. - Monica is going on the road! https://www.syngapresearchfund.org/podcast-episodes/syngap1-stories-episode-012    Share your time and blood too!Volunteer - https://www.syngapresearchfund.org/volunteer-with-syngap-research-fund Donate to the biorepository in OH or IL: - Sept 22, Liberty Township, OH: IRF2BPL Foundation (Home 2 Suites, 7145 Liberty Centre Drive, Liberty Township, OH 45069) - Sept 29, Chicago, IL: KCNQ2 Cure Alliance Conference, September 29th 2023 (Hilton Hotel Chicago 300 E Ohio St, Chicago, IL 60611   This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here  - https://www.syngapresearchfund.org/syngap10-podcast Apple podcasts: https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917 Episode 114 of #Syngap10 - September 10, 2023 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat

Hosts Larry and Rebecca Gifford are preparing for Larry's DBS surgery scheduled for October 24, 2023. During the evaluation for DBS surgery. Larry needed to completely go off meds for at least 12 hours. The medical team tests motor symptoms while OFF levodopa and then after taking a dosage and waiting forty minutes repeat the tests. Evaluators were looking for a 40% or more difference in my motor symptoms from OFF to ON. It was truly revelatory to see just how much levodopa, the medication commonly used for Parkinson's, impacts daily life. MAIL Larry and Rebecca: [email protected] LEAVE US A MESSAGE: Have a topic or questions that you would like Larry & Rebecca to address on a future episode? We would love you to click here and leave a message  https://www.speakpipe.com/WhenLifeGivesYouParkinsons WATCH: Here is a link to see a comparison of Larry ON Levodopa and OFF levodopa Follow us, Larry & Rebecca Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thanks to Curiouscast Dila Velazquez – Story Producer Greg Schott – Sound Design Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada. Thanks also to    PD Avengers – We are building a global alliance to end Parkinson’s. Join us. www.pdavengers.com

ONCE UPON A GENE - EPISODE 197 Rare Disease Dad Chronicles - From Stay-At-Home Fatherhood to My Mejo Co-Founder A Journey Through Costello Syndrome and Parenthood Challenges with Dadvocate - Ryan Sheedy Ryan Sheedy is a dadvocate and the Co-Founder of My Mejo. He shares his journey of courage and determination to provide a service for the rare disease community through My Mejo and of being a rare dad.  EPISODE HIGHLIGHTS Can you tell us about your journey as a rare disease dad? My wife and I found out unexpectedly that we were having twins and that has been the theme of our journey-- you can think and prepare for what will happen and then throw it out the window because you're not in control. Reynolds and Campbell are five and a half years old. We weren't aware of complications with the twins, my wife had a scheduled c-section and we were excited to meet our babies. When they were born, it wasn't the joyous moment we imagined experiencing because both babies immediately experienced complications. That began our journey of a lot of unanswered questions, research, praying, hoping and tests.  What was the motivation for starting the My Mejo platform? During the time in the NICU and trying to keep all the information organized and detailing it for sharing, I drafted the idea to solve the problem of remembering everything and connecting the dots. I created a one pager of all Reynolds' key information and I'd provide it to all new providers and therapists. Reynolds was the inspiration for the platform, but I'm inspired daily by the people I get to meet because of the platform. We launched in June 2022 and today we have 1,400 users using the platform across the country.  How does the My Mejo platform work? My Mejo allows you to collect and consolidate all the information you may need into one place and allows caregivers to provide all the information relating to a child to healthcare professionals or other caretakers. We have a section called Getting to Know Me where parents can note personal details that humanize medical encounters. We work on simplicity everyday- on keeping the platform super simple and very useful. Instead of information being scattered across different places, My Mejo allows you to organize information in a format that is easy on the eye in a version that can be downloaded into a .pdf file, journal, playbook or through text or email with controllable access rights. I should also mention that the platform is completely free for families to use. LINKS & RESOURCES MENTIONED Mejo https://www.mymejo.com/ Global Genes 2023 RARE Advocacy Summit https://globalgenes.org/event/rare-advocacy-summit/ Costello Syndrome Family Network  https://costellosyndromeusa.org/ Dante Labs https://us.dantelabs.com/ International Rett Syndrome Foundation https://www.rettsyndrome.org/ My Rett Ally https://myrettally.mymejo.com/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene 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/ Interested in advertising on Once Upon a Gene? Email ad[email protected] for more information!