Podcast appearances and mentions of Williams syndrome

Camille Fortunato joins Sid live in-studio with her son Anthony, who was born with Williams Syndrome, a rare, complex, multi-system disorder caused by a microdeletion of approximately 29 genes along one arm of chromosome seven. Sid has the honor of throwing out the first pitch at the Brooklyn Cyclones game on June 29th, a night when the Cyclones will be raising awareness for Williams Syndrome and honoring Camille and Anthony's battle against the disability. Learn more about your ad choices. Visit megaphone.fm/adchoices

Meet Luke ~ a walking ray of love and light! Luke has Williams Syndrome, and his beautiful smile lights up every room he walks into~ Resources~ Free Download: Connection Blueprint https://leannaustin.com/connectionblueprint/ Free Download: The One Question https://leannaustin.com/the-one-question/ Connection Crew Program: https://leannaustin.com/register/ Hybrid (One-on-One Coaching) Details: https://leannaustin.com/one-to-one-coaching/ Lovin My Daughter-In-Law Book: Book details HERE LeAnn Austin Website: https://leannaustin.com/ Get the full show notes and more information here: https://leannaustin.com/podcast/

Send us a textIn this special episode, we welcome Zak Scarlato, a friend with Williams Syndrome, who shares his passion for baseball, particularly the Cincinnati Reds, and his unique talent for imitating umpires. Zach discusses his musical interests, including karaoke and instruments he plays, as well as his fascination with trains. Zak also shares insights about his work at the Dunham Recreation Center and his health journey, including surgeries at Cincinnati Children's Hospital. The conversation highlights Zach's vibrant personality and diverse interests, making for an engaging and uplifting episode.TakeawaysZak Scarlato was diagnosed with Williams Syndrome at age two.He has a passion for the Cincinnati Reds, especially Joey Votto.Zak enjoys imitating umpires and has a talent for it.Zak has performed at Champions Grille at its annual Christmas party.Zak plays instruments like the keyboard and drums.He has a fascination with trains, particularly narrow gauge trains.Zak works at Dunham Recreation Center for a couple of hours.He underwent heart surgeries at Cincinnati Children's Hospital.Zak has a fondness for music, including Billy Joel, the Spice Girls, and Taylor SwiftZak enjpys pretty women.He enjoys spending time with family and friends at local events.

Join us for an inspiring conversation with Tyler Pedersen, founder of Endurance Dad Life, as he shares his journey from struggling with alcoholism to becoming a dedicated triathlete and father. Tyler opens up about his 648 days of sobriety, how endurance sports became his pathway to recovery, and his mission to build a supportive community for fathers balancing family responsibilities with athletic goals. Discover practical triathlon training advice for beginners, including swimming strategies, affordable equipment options through Facebook Marketplace, and realistic training expectations for busy parents with limited time. Tyler also shares vulnerably about parenting a child with Williams Syndrome and how these challenges have shaped his perspective on life and purpose. Whether you're interested in triathlon training, overcoming personal challenges, or finding balance as a father, this authentic conversation offers both inspiration and practical guidance for your own journey.

Jennifer Latson is a writer, Pulitzer Prize finalist, and journalist who has written for The New York Times, The Wall Street Journal, Psychology Today, TIME, The Boston Globe, and other publications. She is also the author of The Boy Who Loved Too Much. Jennifer has an English degree from Yale University and an MFA in creative nonfiction writing from the University of New Hampshire. In this episode we discuss the following: Williams Syndrome, which occurs in about one in 10,000 people, makes people incapable of distrust, so people with Williams Syndrome love everyone (and they want to hug everyone). And in return, people love those with Williams Syndrome. I love what Williams Syndrome teaches us. It's not always about what we say, or how we say it. But rather, if we are genuinely curious about people and want to connect with them, they will feel it, and they will be forgiving if we aren't the most articulate or charismatic. Connect on Social Media: X: https://twitter.com/nate_meikle LinkedIn: https://www.linkedin.com/in/natemeikle/ Instagram: https://www.instagram.com/nate_meikle/ Youtube: https://www.youtube.com/@nate.meikle

This week's guest holds an extra special place in Emily's heart. Emily met Nancy Goldberg when she was nine years old at the Belvoir Terrace Summer Girls Performing Arts Camp. As Owner and Director Emeritus, Nancy has dedicated her life to enriching and educating young girls. In this Candid Convo, Nancy reflects on her love for teaching from a young age; her own experiences with summer camps growing up; and launching a renowned arts program for people with Williams Syndrome. She also offers a powerful message on morality and empathy that's much needed in today's busy world.   She Pivots was created by host Emily Tisch Sussman to highlight women, their stories, and how their pivot became their success. To learn more about Nancy, follow us on Instagram @ShePivotsThePodcast or visit shepivotsthepodcast.com.Support the show: https://www.shepivotsthepodcast.com/See omnystudio.com/listener for privacy information.

Friend of the show Oliver Downton returned this week to help co-host the show! Oli is an ambassador for Williams Syndrome and is a wonderful guest. We talked about his work, why the hulk wouldn't be much help in a zombie apocalypse and why his chickens hatched some ducks. --- Send in a voice message: https://podcasters.spotify.com/pod/show/thestevecalisshow/message

This week, we meet an Irish-American father-of-daughters who is even angrier than our own, beloved, Stabler. However, instead of 'swinging from a pole,' said daughter is possessed of superhuman hearing and a charming inability to be "normal" due to her Williams Syndrome. Thankfully, our super daughter is able to help the SVUs get to the bottom of just how many dudes were in mom's bedroom the night she was attacked, and exactly which noises they were loudly producing.Sources:What is Williams Syndrome - Williams Syndrome AssociationMusic:Divorcio Suave - "Munchy Business"Thanks to our gracious Munchies on Patreon: Jeremy S, Jaclyn O, Amy Z, Nikki B, Whitney C, D Reduble, Tony B, Zak B, Barry W, Karen D, Sara L, Miriam J, Drew D, Nicky R, Stuart, Jacqi B, Natalie T, Robyn S, Isabel P, Christine L, Amy A, Sean M, Jay S, Briley O, Asteria K, Suzanne B, Jason S, Tim Y, Douglas P, and John P - y'all are the best!Be a Munchie, too! Support us on Patreon: patreon.com/munchmybensonFollow us on: BlueSky, Twitter, Facebook, Instagram, Post, and Reddit (Adam's Twitter/BlueSky and Josh's Twitter/BlueSky/Letterboxd/Substack)Join our Discord: Munch Casts ServerCheck out Munch Merch: Munch Merch at ZazzleCheck out our guest appearances:Both of us on: FMWL Pod (1st Time & 2nd Time), Storytellers from Ratchet Book Club, Chick-Lit at the Movies talking about The Thin Man, and last but not least on the seminal L&O podcast …These Are There Stories (Adam and Josh).Josh debating the Greatest Detectives in TV History on The Great Pop Culture Debate Podcast and talking SVU/OC on Jacked Up Review Show.Visit Our Website: Munch My BensonEmail the podcast: munchmybenson@gmail.comNext Week's Episode: Season 3, Episode 16 "Popular"This show is part of the Spreaker Prime Network, if you are interested in advertising on this podcast, contact us at https://www.spreaker.com/show/5685940/advertisement

Ayat Tahir joins us in conversation to talk about her experiences in having a child with a rare genetic non-hereditary condition called Williams Syndrome affecting chromosome 7.

Friend of the show Oliver Downton is back! Pokemon cards, Drumming, Shetland ponies and Williams Syndrome.. we talk about it all and laugh as we go. Oliver is one of our all time favourite guests and its a pleasure to have him back for The Garage Era of the podcast. #williamssyndrome #top100 #educational --- Send in a voice message: https://podcasters.spotify.com/pod/show/thestevecalisshow/message

At the tender age of 11, Christopher Knight was a ubiquitous presence on small screens across America, portraying the iconic character Peter Brady. Fast forward to today, and Christopher has embarked on a new cinematic journey as the Co-founder of Former Prodigy Media, a production company he established alongside the two-time Emmy Award-nominated producer, Phil Viardo. In his conversation with host Ryan Berman, Christopher offers listeners an exclusive glimpse into his latest endeavor, "Truelove: The Film," a critically acclaimed feature documentary centered around a rare genetic disorder known as Williams syndrome. Christopher also touches on how his child-acting days shaped his philosophy towards life, learning lessons from both his on and off-screen families.  Finally, the two delve into the significance of seeking and feeling validation, and underscore the pivotal role of humor as one of life's most invaluable qualities.

“Enhancing the detection and treatment of anxiety disorders in autistic youth”“Assessment and Treatment of Anxiety in Williams Syndrome” The Anne Klibanski Visiting Lecture Series was created to support and advance the careers of women. These lectures bring together faculty from institutions that have hosted Anne Klibanski Scholars with MGH scholars, on topics that overlap both research areas. Dr. Kerns will present on “Enhancing the detection and treatment of anxiety disorders in autistic youth.”  Dr. Thom will present on “Assessment and Treatment of Anxiety in Williams Syndrome.”  Presenters: Connor M. Kerns, PhD, Associate Professor, Department of Psychology, University of British Columbia, Vancouver, BC Robyn P. Thom, MD, Instructor, Department of Psychiatry, MGH/HMS Learning Objectives for Dr. Kern's talk: Upon completion of this activity, participants were able to: Describe similarities and differences in how anxiety disorders presented in autistic v. allistic (non-autistic) youth. Describe challenges to assessing anxiety disorders in autistic youth and the importance of autism-tailored anxiety measures. Describe the evidence base supporting adapted and traditional cognitive-behavioural therapy for anxiety in autistic children.  Learning Objectives for Dr. Thom's talk: Upon completion of this activity, participants were able to: To better understand the neurocognitive profile of individuals with Williams syndrome. Consider how cognitive behavioral therapy may be modified for individuals with Williams syndrome.  Discuss emerging psychopharmacologic treatments for anxiety in Williams syndrome. Click here to watch webinar.

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A young man struggling with Willams Syndrome shares his story and offers encouragement in the Lord for everyone going through hard times.

A young man struggling with Willams Syndrome shares his story and offers encouragement in the Lord for everyone going through hard times.

https://thedisabilitychannel.ca/

Did you struggle to breastfeed or chestfeed your baby and never figured out why it was so difficult? Did you feel lost and alone trying to learn to latch, pump, increase your supply and settle into a peaceful parenthood where you felt confident about the decisions you made? Kayla Chatteron is a full spectrum doula and sexual reproductive health educator as well as a placenta encapsulator. But when she gave birth to her daughter, she was just like many of us, hoping for the best and putting her trust in the medical system. It turned out that many of her baby feeding struggles were probably due to the low muscle tone her daughter has due to the later genetically diagnosed Williams Syndrome. On this episode IBCLC you will hear themes related to:Birth complications that could have been avoidedBody feeding while treating jaundice Trying to find body feeding positions that work while a baby is on IVsFeeling alone while learning to feedLack of continuity of careNavigating developmental delays without a diagnosis Finding a pediatrician that will listen to concernsSwitching to formula after milk supply dries upWilliams SyndromeFind all of Kayla's information here!To learn more about William's Syndrome, visit the website Williams-syndrome.orgMake your voice heard on The Milk Making Community Group on Facebook!Head to Apple Podcasts or Spotify for more Milk Making Minutes episodes!Listen to Episodes of The Milk Making Minutes on Amazon Music too!To book a lactation consultation with me, visit my website: www.quabbinbirthservices.com. In many cases I can bill your insurance, or create a superbill for you to submit for reimbursement. I offer virtual consults for clients outside of my service area! Follow me on IG @lonigrosh to laugh about baby feeding (so you don't cry) and to see photos of guests. Follow me on TikTok to answer questions of the day and ponder systemic inequities together: @lonigroshibclc

About Allie Allie is a stay-at-home mom to almost four-year-old Hadley and two-year-old Camryn. She has also been the wife of six years to Brian, and they live in Woodstock, GA. Allie's daughter, Hadley, has a rare genetic disorder called Williams Syndrome, and is thriving thanks to the community around her, or what they call "Hadley's Hive." She loves sharing the raw and real life of being a special-needs parent in hopes of increasing understanding and awareness of Williams Syndrome.   Favorite Quotes “The most painful part of your story may very well be the most life-giving part of someone else's. - Allie   Related Links instagram : @alliefinnegan

Our guest this week is Joel Liestman of Maple Grove, MN who has been a professional actor for more than 25 years, a father to a son with William Syndrome and outspoken advocate for those with intellectual and developmental disabilities. Joel and wife, Jennifer, have been married for 23 years and are the proud parents of Bennett (11) who has Williams Syndrome, a genetic condition present at birth and is characterized by medical problems, including cardiovascular disease, developmental delays, and learning challenges. Joel reflects on the importance of organizations like Parent 2 Parent and the William Syndrome Association have played in Bennett's life and that of his family.That's all on this episode of the SFN Dad To Dad Podcast. Show Links - Email – joel@familyvoicesmn.orgWebsite – https://www.joelliestman.comLinkedIn – https://www.linkedin.com/in/joelliestman/William Syndrome Association – https://williams-syndrome.org/Partnership Resources - https://www.partnershipresources.org/Parent 2 Parent USA – https://www.p2pusa.org/Special Fathers Network - SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 500+ SFN Mentor Fathers, who are raising kids with special needs, have said: "I wish there was something like this when we first received our child's diagnosis. I felt so isolated. There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through."SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations.Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channe... Please support the SFN. Click here to donate: https://21stcenturydads.org/do...Find out about Horizon Therapeutics – Science and Compassion Working Together To Transform Lives. https://www.horizontherapeutics.com/Special Fathers Network: https://21stcenturydads.org/

How Christine Fugate's documentary about an Asian American homecoming queen and her friends, all born with genetic conditions, struggle to fulfill their dreams in a world that refuses to accept them for who they are. Directed and filmed by a crew of filmmakers with disabilities and those who identify as LBGTQ+ and BIPOC, "Queen Moorea" inspires us to embrace life's challenges.

On this episode, Maui tackles Marlene Engelhorn, Billionaires, Zulu Monarch, Paul Pelosi, Capitalism, North Korea, Antisemitism?, and a whole lot more! —— *Please rate and review MAW — 5 Stars for cultural purposes, let's grow this Bunsen burner. You can also listen to MAW on Spotify, Google podcasts, Stitcher, TuneIn or your favorite podcast app... MAW is literally everywhere! MAW is an XO thing, so show Love: xoroyalty.net —— One more thing... “Might As Well” is hosted and produced by mysterious South African comedian, Maui Maw. It's not for the politically correct. Thank you for Listening. P.S. COMEDY! ℗ 2022 XO LUXURY GOODS

Our guest this week is Ron Janowczyk of Colleyville, TX the father of three, a wine industry veteran and owner of Special Strong of Northeast Tarrant County, a sports facility, that helps develop specialized fitness programs for people with mental, cognitive, and physical challenges.Ron and his wife, Gloria, have been married for 39 years and are the proud parents of three children; Lauren (35), Joe (33) and Jake (26) who has Williams Syndrome. After a very successful career in the wine industry, Ron felt the call to do something purposeful and in line with his values driven by his faith, which lead him to creating a Special Strong franchise in Northeast Tarrant County. It's an inspiring story about a father who has a big heart and a passion for inspiring others to be the best they can be.That's all on this this week's Special Fathers Network Dad to Dad Podcast. Show Links:https://www.specialstrong.comhttps://williams-syndrome.orghttps://www.miracleleagueofsouthlake.com Email: Ron.janowczyk@specialstrong.comSpecial Fathers Network - SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 500+ SFN Mentor Fathers, who are raising kids with special needs, have said: "I wish there was something like this when we first received our child's diagnosis. I felt so isolated. There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through."SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations. Special Fathers Network: https://21stcenturydads.org/about-the-special-fathers-network/Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channel/UCzDFCvQimWNEb158ll6Q4cA Please support the SFN. Click here to donate: https://21stcenturydads.org/donate/

Tim and Chris bring on the newest members of the 3 Beards Media podcast family in Josh and Jordan Miover, who bring you their Youtube show WS Twin Warriors. We talk to Chris's stepsons about why they are doing their channel and how they hope to bring awareness to Williams Syndrome. We follow that up by bringing on the twins' mom, Staci also Chris's wife, who tells us the challenges of how their diagnosis went, but also about the gifts she and the boys have learned about how Williams Syndrome, although unique, is also a blessing in some ways for their family. Thanks as always to our sponsors Revelton Distilling at https://www.reveltondistillery.com/ and Kyle Lehman at Wintrust Mortgage https://www.wintrustmortgage.com/kyle-lehman.html. You can find the Twins WS Twin Warrior youtube channel here https://www.youtube.com/channel/UCCXVTOx8ejgn08pLbDNjM-g. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/oldmanstrength/support

You may know him as Peter Brady from “The Brady Bunch,” but now Christopher Knight has partnered with director Phil Viardo to produce “Truelove: The Film.” The documentary seeks to raise awareness about the Williams Syndrome, a rare genetic disorder causing physical and cognitive complications. The film centers around Callie Truelove, who believes that having […]

In this BeansTalk, Garry talks with Evan Englezos about Williams Syndrome, community music, twins, dadness and who he'd love to go out for dinner with. We even have a Speakpipe!The word 'beautiful' tends to feature. A great talk!Links:https://www.evane.com.au/ - Evan's pagehttps://liveinthesaddle.com/ - Evan's community music projecthttps://tomorrowpod.net/ - Evan's podcast See acast.com/privacy for privacy and opt-out information.

Guest: Jennifer Keeton Regional Chair Williams syndrome is the deletion of genetic material from a specific region of chromosome 7.  The deleted region includes 26 to 28 genes, and researchers believe that a loss of several of these genes contributes to the characteristic features of this disorder.  Williams syndrome is considered a rare, one in 10,000 births and 20,000 to 30,000 are living in the United States.  Because Williams syndrome is so rare you would not know someone has it.    https://williams-syndrome.org/ See omnystudio.com/listener for privacy information.

Oliver Downton is a drummer, Pokemon fan and also lives with Williams Syndrome and in this episode he joined me and our mutual friend Pip Clarke to talk about what that means and how he copes day to day. Pip runs a wonderful day service called 'The Shire' for people with all kinds of mental and physical disabilities. This episode was fun, inspiring and moving and I hope you enjoy it --- Send in a voice message: https://podcasters.spotify.com/pod/show/thestevecalisshow/message

In this episode Mel chats with Stacey Touma and Bree Pennie, both of whom have kids on the NDIS, and both of whom work for a wonderful organisation called Kindred that supports families raising kids with disabilities.  Stacey lives in Brisbane with her husband, Mark, and their three children, including Alex, 10, who has a rare genetic condition called Williams Syndrome. Bree lives on the south coast of NSW with her partner, Mitch, her daughter Dylan, 9, and her seven-year-old son Dax, who was born with Congenital Cytomegalovirus (CMV) and has physical disability.  In this conversation we cover parent and carer wellbeing, and the relatively unknown concepts of parent capacity building and coaching.  Link to Kindred's Healthy Mothers Healthy Families program: https://healthymothers-healthyfamilies.com See omnystudio.com/listener for privacy information.

May is Williams Syndrome Acceptance Month. Joining me for this episode of Isaac's Autism in the Wild podcast is self-advocate Laine Anderson who shares with me her journey as a young woman living with Williams Syndrome. We chatted about her early years along with some of the medical  challenges associated with Williams Syndrome. Show Notes: … Read More Read More

Dr. Carrico's UofSC Profile Link: https://sc.edu/study/colleges_schools/music/faculty-staff/carrico.php Constructing a Two-Way Street: An Argument for Interdisciplinary Collaboration through an Ethnomusicological Examination of Music Therapy, Medical Ethnomusicology, and Williams Syndrome Link: https://voices.no/index.php/voices/article/view/2287/2042 Discovering "diffability": Musical experiences and perspectives of individuals with Williams Syndrome at Whispering Trails Link: https://www.proquest.com/docview/1560289549?pq-origsite=gscholar&fromopenview=true From Craic to Communitas: Furthering disability activism through traditional Irish song Link: https://www.ingentaconnect.com/content/intellect/jivs/2019/00000004/00000002/art00009 A Strange Loop is Broadway's Best New Musical (Washington Post) Link: https://www.washingtonpost.com/theater-dance/2022/04/26/a-strange-loop-broadway/  

Shana brings us the unique perspective of being a Mom of a child with Williams Syndrome.  You will learn how she found out and how her child was diagnosed.  She shares some of her joys in parenting  her daughter and also talks about some of her frustrations.  As we prepare to come into May, take a listen.  May is William Syndrome Awareness month.  Here is where you can support Team Daphne for the Walk for Williams.   Episode: 41 Becky Carlson https://podcasts.apple.com/us/podcast/journey-tribe-podcast/id1555408451?i=1000553548660  

Today I'm talking with Megan, who is the mother of three wonderful children. Her first was born with a rare genetic condition called Williams Syndrome. They did not discover this syndrome until he was five months old, and you will hear in her story how those first five months felt like five years. Megan is also a social worker, and she has developed a program that we will talk about at the end of the interview. In this episode, we talk about… [1:53] Megan's family [3:24] Williams Syndrome [4:30] Megan's pregnancy and delivery with her son [6:21] Getting a diagnosis of Williams Syndrome [13:45] Feeling lonely after getting the diagnosis of Williams Syndrome [21:24] Family support and coping as parents of a child with special needs [23:36] Living with Williams Syndrome [26:52] How Megan takes care of herself day to day [30:03] An update on Megan's son and what he has taught her [32:43] Tulip Families: The program Megan developed for families navigating disability and neurodiversity CONNECT WITH MEGAN Website Instagram Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here. Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child's unique experiences. We give you strategies to support yourself and your family through life's challenges.  We are so glad you are here.   Website: childlifepodcast.com Merch: bonfire.com/store/childlifeoncall Instagram: instagram.com/childlifeoncall Facebook: facebook.com/childlifeoncall Twitter: twitter.com/childlifeoncall YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

Today we have the unique opportunity to hear  the perspective of someone who has lived her entire life with Williams Syndrome.  She shines a light on some of the challenges that she has faced and currently faces.  Becky Carlson shares her heart to advocate for people with special needs and to educate others on how to treat and be there for people with disabilities.  She shares one of her big dreams with us! Williams syndrome | Genetic and Rare Diseases Information Center (GARD) – an NCATS Program (nih.gov)

Williams syndrome is a genetic disorder caused by a microdeletion in chromosome 7. This can cause things like cardiac anomalies, hypercalcaemia and intellectual disability, and it is associated with distinctive facial features and personality. Follow us on Instagram @yourekiddingrightdoctors Our email is yourekiddingrightpod@gmail.com (This isn't individual medical advice, please use your own clinical judgement and local guidelines when caring for your patients)

Merrie Kaplan loved Christmas. Born with a rare genetic conditions, Williams Syndrome, Merrie was known as a friendly, outgoing woman, who brought joy to all. Now, her memory has given birth to an effort to extend that joy to families throughout Central Georgia's 14-county area. ‘The MERRIE Christmas Project,' aims to provide gifts, holiday décor, and food to families in need during the Christmas season.  Joining Nancy Grace today: Mike and Nancy Kaplan, Merrie's parents Jaime Kaplan, Director of Philanthropy, United Way of Central Georgia George McCanless, President and CEO, United Way of Central Georgia United Way of Central Georgia is accepting donations for ‘The MERRIE Christmas Project' here. Learn more about your ad choices. Visit megaphone.fm/adchoices

Craig Chaytor was a chef for 16 years, but is now dedicating his life to developing his virtual reality product IMME (Imagine making Memories Everywhere). IMME is named after his daughter Imogen who has Williams Syndrome. This means that she easily experiences sensory overload and can find everyday things very difficult. The IMME virtual reality product is hugely beneficial for children like Imogen and has been shown to improve their development. IMME is currently being used in a research study in the health sector. Links to stories about IMME: https://immemedia.wixsite.com/immemedia (https://immemedia.wixsite.com/immemedia) https://www.bbc.co.uk/news/av/education-45983010 (https://www.bbc.co.uk/news/av/education-45983010) https://www.designcouncil.org.uk/news-opinion/video-designing-better-life-craig-s-story (https://www.designcouncil.org.uk/news-opinion/video-designing-better-life-craig-s-story)  https://www.yhahsn.org.uk/news/supporting-children-with-medical-conditions-through-the-power-of-storytelling-using-virtual-reality/?ref= (https://www.yhahsn.org.uk/news/supporting-children-with-medical-conditions-through-the-power-of-storytelling-using-virtual-reality/?ref=) Connect with Craig here: https://twitter.com/chaytorcraig?lang=en (https://twitter.com/chaytorcraig?lang=en) https://www.facebook.com/imme.media (https://www.facebook.com/imme.media) https://uk.linkedin.com/in/craig-chaytor-b948b3182 (https://uk.linkedin.com/in/craig-chaytor-b948b3182)

This week Bambi joins me again and this time she gets to ask some hard questions about my marriage. My very special bestie, Aubrey joins us as well. Aubrey is Bambi's daughter and has Williams Syndrome. I am so excited for you to meet her!

All Home Care Matters is honored to welcome a very special guest, Vicki MacGregor.   Vicki is sharing her personal story and experience of her son, Stephen. Stephen was diagnosed with Williams Syndrome when he was 13 months old. We discuss what it was like as she was raising Stephen and the trials and accomplishments that they experienced.   Vicki is sharing her story for the first time in a very long time and shares how she handled this diagnosis and how through a mother's love helped Stephen to not be defined by a label. During this interview Vicki takes us through her journey raising him into a remarkable young man and we hope that you will be encouraged by her story and also become better informed about what Williams Syndrome is.  Connect with Vicki: Email: victoria@victoriaspress.com Website: https://www.victoriaspress.com

Aaron Westphal is a black belt in Brazilian Jiu-Jitsu, as well as a Sheriff's Deputy. Courtney Westphal has taught kindergarten for 15 years in the public school system. Together they have two children, one of which is diagnosed with Williams Syndrome.   Without further ado, sit back and enjoy the podcast.   Find LMNT here: drinkLMNT.com/growinggorillas   You can also watch the video version of this podcast here: https://youtu.be/y60iZM9f8TI

Today we follow-up on the baby fetish debate, and respond to feedback from a listener. We learn about Williams Syndrome which makes people filled with love for everyone they meet. We discuss a company where you can "rent" a friend, and we debate whether this is a nice idea or an AWH (accident waiting to happen). We learn the truth behind expiration dates, and the reason Big Grocery wants you to throwaway your food. Susie explains why crowds disgust humans unless the other people in the crowd are thought to share our values, worldview, or insider status.  Join our book club, shop our merch, sign-up for our free newsletter, & more by visiting The Brain Candy Podcast website: Connect with us on social media: BCP Instagram: Susie's Instagram: Sarah's Instagram: BCP Twitter: Susie's Twitter: Sarah's Twitter: More podcasts at WAVE:

Here's what happened on the full show available on my Patreon.1 – 0:00:00 – Tigers on a roll. Who's ready for intercourse? You need Tokens for bathroom privileges. People watching at Rosa Park.2 – 0:20:19 – Skydiving without a parachute.3 – 0:29:20 – Draymond Green's penis on display. Eric's story of sending crank to Diana during Tiger's game.4 – 0:39:39 – Rio Olympic games fiasco is getting even worse. Sports updates.5 – 0:50:26 – 10 minutes with Huge.6 – 1:03:30 – Interview with Pellerito; “Dude threw a taco at me”.7 – 1:16:04 – Julius and Age Management – day 1. Car accident with bees; funny TV interview with witness. Sports updates.8 – 1:38:12 – Racial fiasco goes viral in Grand Rapids.9 – 1:51:02 – Trump picks a fight with grieving Muslim couple. Trump stuck in an elevator.10 – 2:03:03 –  - Start at 2:15:07 to skip directly to segment 11.11 – 2:15:07 – 5-in-10 challenge. Jean-Claude Van Damme freaks out on TV. Hot Air Balloon catches on fire. Skydiving without a parachute (story from segment 2).12 – 2:33:42 – Katie Roodvoets interview for Williams Syndrome fund raiser.13 – 2:44:32 – Dogs drive car into a Walmart. Replaying hillbilly bee interview dude from segment 7.Advertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

We learned a little bit about Williams Syndrome this month, thanks to listener Devra --https://williams-syndrome.org

We learned a little bit about Williams Syndrome this month, thanks to listener Devra --https://williams-syndrome.org

Ole Miss slugger Cael Baker joins Parrish and Dalton to discuss a recent fan interaction and his support of a young girl with Williams Syndrome during the SEC Tournament. Parrish and Dalton also preview the Starkville regional. _________________________ We appreciate our sponsor: The Oxford Park Commission. They can be found at: facebook.com/oxfordparkcommission  instagram.com/oxfordparks/  oxfordparkcommission.com ___________________________ Want more Mississippi State or Ole Miss sports coverage from the Daily Journal? Follow Parrish Alford on Twitter: twitter.com/parrishalford Or join his exclusive Ole Miss Facebook group: facebook.com/groups/2043687672367459 Follow Dalton Middleton on Twitter: twitter.com/dlmiddleton8 Or join his exclusive Mississippi State Facebook group: facebook.com/groups/180386896631211

Help out! https://issuesintheworlds.carrd.co/ https://dotherightthing.carrd.co/ Welcome Sofia Napoli to the podcast! Listen as we talk about Williams Syndrome, bullying, mental health, the power of healing music, eating disorders, spreading kindness and so much more! Thank for listening! If you like the pod, share it with your friends! Share it with Sofia! Share it with people you know to send them support! Leave us a review on apple podcasts!! I swear I'm on there. If you do, I'll love you forever. Want to get involved? Contact us! Ask advice, send us topics you want us to cover, or share your own stories! I'll read your stories out if you let me. If you want to hear your own voice on the pod, leave me a voice memo on Anchor! Linked at the bottom of the description! EMAIL: hsuncensored@gmail.com TWITTER | INSTAGRAM | PLAYLIST | MARY Look at Sofia's shoutouts! https://www.instagram.com/sparkedbysofia/ https://www.instagram.com/thegirlwithws/ https://www.instagram.com/theteamsofia/ https://www.instagram.com/sofiefromtheblock_/ https://twitter.com/SofiaNapoli54 Nature Valley Bars! Please sponsor me :,) --- Send in a voice message: https://podcasters.spotify.com/pod/show/ashley-zhang/message Support this podcast: https://podcasters.spotify.com/pod/show/ashley-zhang/support

A mother looking after her severely disabled son 24/7 could be in line for significant compensation and lost wages after a court ruled she is an employee and her boss is the Ministry of Health. Christine Fleming looks after her 40-year-old son Justin around the clock. He has Williams Syndrome - a genetic disorder that causes developmental delays, medical complications, and cannot be left alone. Fleming has survived on a benefit rather than accepting Ministry of Health funding, as that would have left her financially worse off. Now the Employment Court has ruled she is a home worker having been her son's primary carer since birth, the Ministry of Health knew she was doing the work and her son Justin lacks the mental capacity to employ her, so the Ministry is effectively her boss. It means Christine Fleming is entitled to lost wages, holiday pay and potentially other compensation. Disability Advocate Jane Carrigan helped take the case. Dana Cocks is Justin's older sister. She told Checkpoint the family is trying to get their heads round the decision - but it is a relief to get some recognition.

Welcome to another episode of House of Minds - where conscious conversations hold  potential to deliver you keys through others journey's to unf*ck & expand your mind. I broke the mold on this one! Last minute booking, free flow convo w/o a script & vulnerable shares from my part about my personal journey…Meet Jennifer Keeton, Recovering perfectionist, former workaholic & Mom to 2 beautiful souls – including a daughter with Williams Syndrome. We dive into all the above topics, plus some – and share our journeys, our messages, and how love was ultimately what started the earthquake to shake away old & rise within new. You can find Jennifer on IG - jenkeeton  - for questions, support or possible collaboration in regards to advocacy for children born with congenital disorders. You can learn more about myself through my IG - Christinalynn_wellness and read more about my journey at christinalynnwellness.com.  --- Support this podcast: https://podcasters.spotify.com/pod/show/house-of-minds/support

On this week's guest episode, I interview Melana (Mel) Amato on her experiences with Williams syndrome and anxiety. Mel also speaks on the importance of human connection. To hear more, give it a listen! Williams syndrome is a rare neurodevelopmental genetic disorder. To learn more visit https://williams-syndrome.org/ For more information on project search visit https://www.xavier.edu/projectsearch/ To follow me along on Instagram visit @copingwithcolleen

This episode is also available as a blog post: http://kingdablog.com/2015/01/03/williams-syndrome-and-the-language-instinct/

Tara Parham, the daughter of a disabled USMCS Veteran, eighty-sixed her 6 figure income career in Government Healthcare and Lean Six Sigma, after falling ill with the first of 3  rare diseases that are associated with her dads exposure to Agent Orange, a dioxin used while he was serving in the Vietnam War. Her goal is to shed light on those who are struggling with the many debilitating conditions from Agent Orange and other Rare Diseases; to advocate for  those who are struggling to find Help, their voice, and are unable to advocate for themselves.  TRANSCRIPT s8e10- PodcastDx- Agent Orange   Lita T  00:10  Hello and welcome to another episode of podcast dx. The show that brings you interviews with people just like you, whose lives were forever changed by a medical diagnosis. I'm Lita. Ron  00:22  I'm Ron Jean  00:22  and I'm Jean Marie. Lita T  00:23  Collectively, we're the hosts of podcast dx. Our guest today is Tara. She is the daughter of a disabled US Marine Corps veteran who had to leave her position in government health care after falling ill with the first of three rare diseases that are associated with her dad's exposure to Agent Orange. It's a dioxide, Jean  00:48  dioxin Lita T  00:50  used while he was serving in the Vietnam War. Her goal today is to shed light on those who are struggling with the many disabling or debilitating conditions from Agent Orange and other rare diseases, to advocate for those who are struggling to find help their voice and are unable to advocate for themselves. Jean  01:12  Hi Tara. Hi, Tara, Tara  01:14  Hi, Ron  01:16  Tara to give our audience some background on Agent Orange. Birth defects are showing up in children of veterans who served in America's military during the Vietnam War. The mil, the military actually sprayed more than 20 million gallons of the powerful defoliant in Vietnam, Laos and Cambodia to deny the enemy food sources and cover 10s of 1000s of American military personnel handled, sprayed or were sprayed by the herbicide. The chemicals in Agent Orange are known to cause a variety of illnesses including several types of cancers, among other diseases. The list of illnesses tied to Agent Orange is posted on the Department of Veterans Affairs website, and they include and I may struggle with some of these Lita T  02:09  good luck Ron. Ron  02:12  Al amyloidosis. Chronic B cell leukemia, Jean  02:18  leukemia, Lita T  02:19  leukemia, Ron  02:19  leukemia. Told you I was gonna struggle Lita T  02:24  mmhhmm Ron  02:24  Chloracne, Is that right? Lita T  02:26  Well, we could try. Jean  02:27  And actually I was just watching there's a Netflix series on now about spies. And one of the individuals who they attempt attempted to assassinate with dioxins has this and it's very, very it's a very visual type thing you can really you can definitely discern that. That's what that is. Ron  02:48  Wow! There's also Lita T  02:51  diabetes type 2 Ron  02:52   Yep. Thank you Hodgkin's disease, ischemic heart disease, multiple myeloma, also non Hodgkins lymphoma, Parkinson's disease, peripheral neuropathy, at least the early onset of it. Porphyria Cutanea Tarda. I hope I got that right. It also includes prostate cancer and other respiratory cancers, such as lung cancer, cancer of the larynx, trachea and bronchus. Also soft tissue sarcomas other than osteosarcoma, Chandrosarcoma Kaposi sarcoma, or mesothelioma. And a group of different types of cancers in the body tissues such as muscle fat, I'm sorry, muscle, fat, blood and lymph vessels, and also connective tissue. And it took decades for the Department of Veterans Affairs to admit that the powerful herbicide poisoned 1000s of their military members. Jean  04:00  And that's right, Ron, Tara  04:01  Yes Jean  04:01  and the children of the men and women that served and were effected by Agent Orange have a possibility of being you know, like the children might be born with spina bifida that's quite common. And that's a birth defect that occurs while still in in utero, and where the spinal cord fails to close at the bottom. And then children of women that served in the same situation have a larger set of possible birth defects that the VA does recognize. And that's because women are born with the same number of eggs, you know, they they carry those with them their entire lives, whereas men are constantly producing new sperm. Lita T  04:37  Right. And we are going to get to our guest in a minute. Tara  04:40  I know Lita T  04:40  I hate to put you off, but we're just trying to save you some of the background information here, Tara, According to... Tara  04:48  No, I appreciate it. Lita T  04:49  (laughter) That's okay. According to the VA that covered birth defects for children born to women who served in Vietnam and the Korean demilitarized zone. Include. Okay, now it's my turn. Ron  05:02  Exactly Lita T  05:03  Achondroplasia, cleft lip and cleft palate, congenital heart diseases. congenital talipes equinovarus Oh, that's called clubfoot. Okay, I should have just said clubfoot, esophageal and intestinal atresia, Hallerman-Streif or Steiff? stryfe Hallerman-Streiff syndrome, boy  Jack's gonna have fun editing this one Jean  05:30  Or Dom Lita T  05:31   or Dominic, whoever gets lucky, Ron  05:33  Dominic's shaking his head no. Lita T  05:34  (laughter) Hip dysplasia, Hirschsprung's disease which is a congenital mega colon, hydrocephalus due to aqueductal stenosis. Hypose, hypospadias, hypospadias. We'll say hypospadias, imperforte anus, neural tube defects, Poland syndrome pyloric stenosis, syndactyly or fused digits. Oh, that's like webbed feet. Is that right? Okay. tracheoesophageal fistula? I did pretty good on that one, undescended testicle. Williams Syndrome, Jean  06:24  and we laughed at the fact that we can't pronounce these things. Lita T  06:27  Yeah, we're not laughing at the disease. Ron  06:30  the sad part about is this agent orange causes all of this. Lita T  06:33  Yeah, Jean  06:33  Right, right Lita T  06:34  Yeah. Jean  06:34  And I mean, Tara, you must have become like an, you know, you have to know so much and learn so much. Because these are things that people normally Lita T  06:44  normally don't even think about Jean  06:45  haven't even heard. Lita T  06:46  It's not in our everyday vocabulary.  No.  So, Tara, (laughter) back to you. Thank you for taking the time to speak with us today. We really appreciate it. Now, can you start our listeners out by telling us what conditions are you personally dealing with? Tara  07:01  Yeah, well, thank you for having me. I'm really grateful to have this opportunity to speak about this. Because, as you just mentioned, all of those conditions that I'm gonna put in, quote, air quotes recognized as being caused by Agent Orange, there are a slew of other conditions. And along with medical research out there that support connections between Agent Orange and these conditions, although they're not identified as being recognized. I myself have just in the past three and a half years been diagnosed with three of those. The first is a vascular necrosis, which I have in both knees, both hips and both shoulders. A Vascular Necrosis is the the first that I was diagnosed with, which is technically called multifocal, because I have it all over. There are many citations out there that support the association between Agent Orange and a vascular necrosis. And the second diagnosis that I had was intracranial hypertension, which I actually caused me to go blind, Lita T  08:17  Ohh! Tara  08:17  completely blind, and I was never supposed to, I was never supposed to see again, ended up having to have a brain operation and a VP shunt, but that it's a central nervous system disorder that affects your your ventricles, your vessels, which is linked to the agent, orange dioxin similar to spinal bifida,  Chiari, which there's literature out there supporting the connection to that as well. Lita T  08:44  MMhhmm Tara  08:44   And the third that I was diagnosed with last year was interstitial lung disease, which causes doctors to ask if I've been around birds. But it's not just me. My sister also gets it. And there is also a slew of research out there showing the connection between respiratory conditions, not just lung cancer, respiratory cancers that are related to Agent Orange. And as recently as July 21 2020. There was a research article on that by is on the VA website for lung diseases, saying that additional research needs to be done for the veteran. So if all this research still needs to be done for the veterans, there's still so much that has to happen just for their descendants, their offspring Ron  09:41  Right, Lita T  09:41  Right, right, because I've heard that it's also being passed on to the grandchildren. So it must be doing something Tara  09:48  Yes Lita T  09:48 in the genetic links, right? Tara  09:50  Yes. Yes, it's multi generational, and it can lie dormant for years like mine didn't. It didn't show up until I was 40. Ron  10:00  WOW! Tara  10:00  yeah. And and my sister, my sister was actually born with webbed feet, which they recognized as one of the Ron  10:09  conditions? Tara  10:09  things that correct that can be passed on to descendants. That and she also has the same lung condition that I have. But so we both have it. Lita T  10:18  Wow Jean  10:19  and dioxins are also found in other areas. I mean, it's something that if you're, you know, say your your family wasn't exposed to Agent Orange, but you know, you should be aware of it, Lita T  10:30  like landscapers, are you saying? Jean  10:31  No, like on paper mills, Oh, there they are found in other areas in in industry. And this actually does kind of hit close to home because, um, Agent Orange was originally developed at the University of Illinois as a means to help grow soybeans. And it wasn't it used it Lita T  10:38  as a chemical weapon Jean  10:42  originally, very low doses, and then the military Lita T  10:53  weaponized it basically. Jean  10:54  Yeah, yeah Lita T  10:55  Well thank you, Tara. I think our listeners have a better understanding of what we're going to be talking about now. Since we only discuss one one diagnosis per episode, we would like to discuss your battle with multifocal avascular necrosis, also known as AVN. Perhaps you're willing to come back on another episode and talk about the other problems individually? Would that be okay? Tara  11:19  Absolutely. Lita T  11:20  Great. So we could make this into like a mini series? Jean  11:24  Yes Yes. Cuz I mean, it's, it's Tara  11:26  absolutely. Lita T  11:27  That would be really, really great. Jean  11:28  Yeah Well, and yeah, we can kind of understand that when you when you volunteer for the military. You know, there's a lot of things that you're going to be exposed to that normal, civilians...  Yeah. Lita T  11:28  And I don't know if you're aware of, but Jean and I are both veterans. And we always support any veteran activity that's out there. Because it's also supporting us. Jean  11:49  Actually we just, you know, we were just saying this morning that, you know, the vaccine for COVID is not mandatory, they can't really make it mandatory. However, in the military, it would be mandatory, because you're giving away your life for your country. Tara  12:04  Yeah! Lita T  12:04  However, does that mean you're giving away your children's lives, your grandchildren's lives, this is where this topic is going to be important. Jean  12:12  And there is there is the onus on them to keep their personal safe. Lita T  12:16  Yeah. Jean  12:16  And whenever possible, prevent, you know, disease and illness Lita T  12:20  Right Jean  12:20  that kind of situation, Lita T  12:21   right Tara  12:22  Yep. I completely agree. And oftentimes, you know, the military families, the sacrifices that they make when their loved ones are off serving, or the sacrifices, in this case, their health. So I completely agree. Lita T  12:39  Well, yeah, we never would have expected this type of a reaction based on Agent Orange, but now we're learning Jean  12:47   Yeah. And Tara  12:48  I know, Jean  12:49   Tara, can you tell us? What is AVN? And which bones? You said that you have it? It's multi Lita T  12:55  shoulders? Jean  12:56  Yeah. Shoulders in everything? Can you tell us which exact which joints are affected in your body? Lita T  13:01  And what is it Jean  13:01  in? What is it? Yeah, Tara  13:04  sure. Well, avascular necrosis is It's the result of reduction of the blood flows to the bone. I, I have it in both knees, both hips, both shoulders, which basically means my bones didn't get enough of the blood, which caused them to start to die. And once the bones start to die, they don't just regenerate themselves. Now, here's an interesting fact. I was diagnosed with this three and a half years ago, my dad, the veter... the Vietnam veteran was just diagnosed with that three months ago. And Jean  13:41  Oh my gosh, Tara  13:42   and there's multiple, like I said, there's multiple citations out there of so many other veterans and their descendants, who have also been diagnosed with avascular necrosis. But what it does is as the bone dies, it brings the entire joint with it. So oftentimes, it's missed. It's not diagnosed until it's until at a later stage, which makes it a lot more complex. And it's very hard to find. Lita T  14:14  Does it start out? Yeah, the symptoms as they start out, is it does it feel like a arthritic type of a feeling or how did the symptoms start with you? Tara  14:24  Well, what started interestingly, I woke up one morning and I thought that I had twisted my knee and my sleep. So it felt like a torn ligament in my knee. And I ended up going to the emergency room and I was misdiagnosed with bone cancer. Because Ron  14:44  Oh Wow, Tara  14:45  it Yeah, it looks like bone like white specks all in my bones. Jean  14:52  Mhhmm Lita T  14:52 Ohhh! Tara  14:52  And that's the dead bone marks. They're called bone infarct. So I have that as well as, as the death on the end of the bone, which is the a vascular necrosis too. So that was the initial diagnosis. And I, it took me all over the country, I ended up going to Mayo Clinic in Rochester, Minnesota to trying to find a diagnosis and help, which ultimately landed me in New York City at New York Presbyterian, where I found a doctor to do a bilateral hip procedure on me to try and slow down the progression. Lita T  15:31  Okay Tara  15:32   So, and maybe I should touch more on, I guess, how do you want me to touch more on the connection between avascular necrosis and Agent Orange? Lita T  15:42  Sure, sure. Tara  15:45  Okay, hold on, let me get let me get there, my notes... Lita T  15:49  she that's what Jean was saying. You have to become a expert. Jean  15:53 Subject matter expert  I think there should be honorary doctorates. Lita T  15:56  Yes. Jean  15:57  For patients like you. Yeah Tara  15:59  Yeah, you have to you have to be your own, like advocate. And that's the biggest challenge especially says it's considered rare. There's not a lot of doctors who actually have the knowledge that you need. So you get Misdiagnosed, and you get misinformation, which causes you to lose time, and your options for treatment diminish. Ron  16:25  Absolutely Tara  16:25  So hold on one second. Sorry. Jean  16:29  And I think Mayo Clinic is very interesting in Rochester, Minnesota, because the weather gets so cold there. I like to call it mole city. I don't know if they would agree with me calling it mole city Lita T  16:39  (laughter)  the tunnel. Jean  16:39  But there's tunnels underground that connect the hospital to like the hotels, the hospital to the grocery store, to the library. So you don't have to go out there. freezing cold Lita T  16:49  It's very nice. It's very nice Jean  16:50  It's unique. It's it's kind of fun. Lita T  16:52  Right? Jean  16:53  And there's little shops all along the route. Lita T  16:55  Yes. Tara  16:55  Okay. Here we are. So the connection with the a vascular necrosis, and Agent Orange. So Avascular Necrosis, like I said, it's a result of the reduction of the blood flow to the bone. And Agent Orange has an adverse effect on blood vessels. So there's medical literature, literature that support Agent Orange, and the dioxin is capable of lying dormant and the effects that it has on the blood vessels. So it's actually the result? Yeah, hold on one second. Lita T  17:32  I know I read the word stenosis and a couple of the different results. Tara  17:37  By patients? Lita T  17:38  Right. So stenosis is is reducing in size, so possibly, the blood vessel size is reduced at the at the bone. Could that be part of it? Tara  17:49  Yeah. It's because it's not getting because of that the blood is not flowing the way that it needs to. Lita T  17:55  Right. Jean  17:56  And I guess most people don't think of their bones as first of all even needing a blood source. Lita T  18:00  Yeah, yeah Jean  18:01  but you don't realize that the osteocytes and, and everything inside your bone that you know that there's constant growth in bone and that it's still... Tara  18:07  I know. Jean  18:08  Yeah, because you think it's like set in stone. But really, it's, you know, part of your living Lita T  18:14  body, Jean  18:14  it's part of your body that's, you know, it's constantly Lita T  18:16  most people don't think about it Jean  18:17  regenerating,  yeah. Lita T  18:17  Right, right Tara  18:19  It is. And a lot of people also kind of confused a vascular necrosis, which is also called osteonecrosis, but they confuse it with osteoporosis. Lita T  18:30  Right, right Tara  18:32  Like, Jean  18:32  ohhhh, Tara  18:32  Oh, they're like, you have Ron  18:34  brittle bones? Tara  18:34  osteoporosis. I'm like, it's not osteoporosis. Lita T  18:37  No, no Tara  18:39  It's osteonecrosis.  And it's completely different. I went through that, initially, to once I found out that it was the a vascular necrosis, it was very challenging to explain to people actually, what it was, who had assumed that it was osteoperosis, Ron  18:40  Right Lita T  18:40  Different Ron  18:40  Right, right  you know, as we're talking, I just, it reminds me and this is going way back, when I was in college, I had done a paper on the banning of chemicals and Agent Orange. Jean  19:14  Mhhmm Ron  19:14   It was done like in the mid 70s, or something like that, because they knew it was bad. They just didn't know how bad Jean  19:22  Mhhmm Lita T  19:22   Oh Wow. Ron  19:22  And this is where the stuff that we're talking about now is the result of all the research from that but way back in the 80s when I did this paper, they knew that this stuff was bad and that's why they said no more of these chemicals. Jean  19:39  Well, it kind of reminds me of lead in fuel. Ron  19:41  Mhhmm Jean  19:42  And you know, like to prove that it was perfectly fine, which it's not the someone actually dipped their hands into it, and then later on, developed all sorts of cancers in both arms. But you know, like we I guess it takes time and research and, you know, you have to think about the effects down the road. Ron  20:00  The long term Absolutely. Jean  20:01  And it's not. Yeah, it's a challenge, Lita T  20:03  right? Tara  20:04  Yeah. And I remember reading somewhere that the amount of chemical that was used over there covered the span of I think it was like Kentucky and another state combined. And it was actually the the combination of the chemicals in Agent Orange. The thing is tcdd tetrachloride benzodioxine, dioxin tcdd. It's the chemical group of compounds named dioxins. And that's what makes Agent Orange as notorious as it is. And it's actually considered the most toxic of all dioxins, which is saying a lot, because dioxins are notoriously toxic. So, yeah, it's, um, I don't know, if you guys watched Chernobyl, that show? Jean  21:01  I haven't seen that one yet. It's on my list. Tara  21:03  Oh, I'm wondering how come they haven't done something like this for Agent Orange? Jean  21:08  That's interesting Tara  21:09  I'm like, yeah, Jean  21:10  yeah. And I've been to see, oh, what has it done to the population? Lita T  21:13  in Vietnam? Jean  21:14  Yeah, in Vietnam? Because, um, you know, it's a long lasting chemical. And it's, yeah, it's got to have long term effects. Lita T  21:22  Right. Jean  21:22  Yeah. And then it's also in the environment at large. Tara  21:25  Yep. And there is actually I've read a lot of things about the effects of the what's happening in Vietnam because of this. It's still being in the soil, so... Jean  21:37  And, and there's probably, you know, if your going to have does have research and information, that's probably a good source as well, because they have a probably a greater population from the exposure. And actually, I think that takes us to Ron's question... Ron  21:50  exactly. Can you tell us how common is a vascular necrosis? And actually, how is it treated? Tara  22:00  Sure, so a vascular necrosis is probably anywhere from 10 to 20,000 people a year are diagnosed with it. So in order to be considered a rare disease, it's 200,000 or less avascular necrosis is 10, to 20,000. Jean  22:20  Okay Tara  22:20  So to treat a vascular necrosis and I need to give a plug here, because a lot of my information, Dr. Michael Mont, at Lenox Hill, who has, I was scheduled to have surgery on both knees, both hips in both shoulders in September of this time here, but due to COVID, and all of that, a couple of other mishaps, I actually kind of got sick with my lungs, too. We're postponing it, but he is phenomenal. He is a avascular necrosis guru, let me say that. So a lot of what I am speaking to is from literature that I've read that he wrote and talks about. So as far as treatments go for a vascular necrosis. As I mentioned earlier, a lot of people don't get a diagnosis until later in stage three, to give a little background on this, there is different staging, I guess, models that are used, there's ARCAT, then if you use the ARCAT, there's ARCO there's four stages, the first two stages are only identifiable on an MRI. So most people aren't going to be if you go to the doctor and you have knee pain or something they're not they're going to do an X ray. And when they don't see anything, it's like I don't, you're fine. Most, a lot of times, you don't go for an MRI for multiple reasons. So you don't get diagnosed until the pain progressed, and it gets really bad. Well, it's during those first two stages, where you have the less invasive procedures that are options that could help prolong you, possibly your bone completely dying and needing total replacements and it's becoming mobility issues, as well. So Another interesting fact here, too, and I'm kind of all over the board, but you know, Lita T  24:29  yeah, you know, it turns out to be like a spider web, you know, one thing leads to another but go ahead and take your time.  Tara  24:35  I know avascular necrosis, there are a couple kind of well known people that had it A-Rod had it in his shoulder, Mike Napoli. Oh, the Red Sox play for the Red Sox, but theirs were caught. It was caught really early because they had to go through rigorous physical. So they had really high success. But I can't stress the importance of especially If somebody has history of Agent Orange, and they're having hip pain or something of that nature and their knees, hips or shoulders or something, especially if they have underlying health issues that prompts them to need prednisone or steroids, cause that contributes to that. It's like a perfect storm, Lita T  25:24  okay Tara  25:24  with the agent orange to cause a vascular necrosis. So did I answer your question?, Lita T  25:32  Yeah that makes sense. That makes sense. Right? Tara  25:35  I didn't finish answering the question though, Lita T  25:37  no, that's okay. But at least that gives some background. Right. Right. Tara  25:41  Okay, Jean  25:42  well, yeah. And I think, you know, if you go to, you know, your orthopedist, and I don't think you know, is it typical for them to ask you? So did your parents, you know, serve in Vietnam? Are they exposed Agent Orange, it's, if it's not on their intake information, you really do have to advocate for yourself. Lita T  25:58  Right? So the treatments again, the the initial treatments are, are what? Tara  26:06  Okay, there you go. See, I didn't even answer it. Ron  26:09  (Laughter) Tara  26:09  So there's a there's, there's quite a few different treatments for the stage. And it's a little bit controversial, too, because, because it's rare, and most people don't get diagnosed until stage three and four. That means that there's not a lot of people to actually do tests that are trials on Lita T  26:35  Oh Okay Tara  26:35   stage one and two, or phase, the earlier stages. But very popular and somewhat controversial, depending on who you talk to is a core decompression, where they use bone marrow efforts that stem cells. So what accordi compression is, is they take and drill holes into your bone. And they inject stem cells into the bone marrow in hopes of regenerating the bone. Lita T  27:10  Would they be your own stem cells? Tara  27:12  Yes Lita T  27:13  Okay? Tara  27:13  Yeah, yes. But I also have for earlier stages. Do they also do PRP for protein rich? The Lita T  27:21  plasma Tara  27:22  stem cells? Lita T  27:23  Okay. Okay. Tara  27:25  But as far as treatment for the later stages, and that so.... So why I said it was controversial is because some orthopedist will say that, if you have a core decompression, you're kind of wasting your time, because it might buy you a little time, but you're still ultimately going, it's still going to collapse in the long run. And you're still going to have to go through all of the other things. So why even do the core de-compression? Lita T  27:58  So it's just it's just a temporary Jean  28:01  stop gap. Lita T  28:01  A stop gap Yeah. Ron  28:03  How much time? Jean  28:04  Yeah, Tara  28:06  it varies. And it's not always, that's not always the case, I had the bilateral hip core decompression in January of 2018. And I mean, I had tremendous relief after I did, and so far, like, it's, it hasn't gotten to the point to where I would need like to have it again. Like the pain hasn't gotten to that point to where it was before I had that surgery. So it's but there's other people who have had success and haven't had to go on and have any further surgery. So it's, it's not a, everyone will will have to it's there might be some that do and some that don't. And so the some that that do ultimately have to go on and have it that causes them to say that not to have it I don't know. So it is controversial. Lita T  29:05  Okay Tara  29:06  If you ask anybody, you'll get mixed reviews on whether you should or shouldn't. But the the guru, Dr. Michael Mont will tell you yes. To do the core compression, and I'm right there with him. Lita T  29:18  Okay. Tara  29:19  A majority of the time, I guess it depends there are things that so so let me just kind of say this. There's it depends on how much of the articular surface though, is covered with it has dead bones. Like if there's 75% or more, that has dead bone or if it's less light, so there's so many different,  "if that, then that" Lita T  29:47  Right, right. Tara  29:48  And so Lita T  29:48  like with cancer, you know, they treat cancer based on how much progression there is, are they going to use radio radiation or chemo? So I'm sure that they base it based on like, you're saying how bad it has progressed, right? Tara  30:02  Correct, correct? Yeah. But that's for the first on the stage one and stage two, stage three and four get more complex. Jean  30:14  Okay Tara  30:14  So you have a variety of different options depending on, like I said, how much dead bone there is, as well as where it's at, where the dead bone is at. I have dead bone. It's 75% on one side, 85% on the other, my hip, and my knees are actually stage three. And my, my, my right, left shoulder is stage three, my right is stage two. And what that means is that some of the more less, the less invasive procedures, maybe don't have a high success possibility. It doesn't mean that it wouldn't possibly work, shall I say? Does that make sense? Jean  31:04  It does, but is is like a replacement of the joint possibility. Tara  31:15  Is the what I'm sorry, Jean  31:16  can can they replace the joints? Tara  31:19  Yes. But you wouldn't do that until stage later? Well, it depends on how much pain you're having to and a lot of it is derived by it by that. But yes, replacing it is an option. So and let me just explain this. This is the best explanation that somebody gave me on how to explain a vascular necrosis. So a vascular, a lot of people think that a vascular necrosis is like your joint. Something happened because you get a joint replacement. But what's happening is picture like whenever they lay of road, paver road, they lay sand down first and then they lay asphalt on top of it. But as you get a pothole, what happens is that sand settles and as the sand settles, then it pulls that asphalt down. So that's the same thing that's happening with the bone as the bone is dying because that's what a vascular necrosis is, is the bone dying as the dying is pulling down and that's what pulls your joint down and all of that, and it pulls all your ligaments and cartilage down and that's why you had to have all of it replaced. Jean  32:35  So it's like sinkholes in the bone. Okay. Tara  32:38  Yeah. Because your bones they're dying and they're, they're collapsing. And so as it does, it's taking everything with it. Lita T  32:45  It's not just the not just the bone at the joint itself, but could it occur anywhere along the bone? Tara  32:55  Yes, I I actually have it that called bone infarct, I have a vascular necrosis at the ends of my bones. And then I have bone infarct, which is dead bone patches throughout the long parts of my bones to which is where a lot of the the cancer that's where the cancer misdiagnosis came because it looks like that it shows up white in the images. Lita T  33:25  Okay, Tara  33:26  but yes, Lita T  33:27  wow, Jean  33:28  yeah, Tara  33:28  for stage three and four, they have multiple different options, like there's an OATS procedure, a vascular graft procedure, ultimately, yes, a total replacement would be, I guess, that I want to say worst case scenario, but before the meet at that age, is a replacement for your hip would only last 10 years. Jean  33:55  Okay, so they try to hold off. Tara  33:56  Now it's actually lasting longer. Sometimes I think it's different if you have a vascular necrosis because the bones especially if they continue to kind of die after you've had the replacement, Jean  34:09  right? Like after the bone isn't. Lita T  34:12  Right. Jean  34:13  Okay.  I was just gonna say this, the shaft of the bone is supporting that joint. And so eventually, like, you'd have to place the shaft and the joint itself. Lita T  34:20 Right So Jean  34:21  and you're Lita T  34:22  Why can't they get to the point where they're actually just solving the cause Jean  34:27  the, stopping the necrosis. Lita T  34:28  Right So in other words, like, Jean  34:30  right, Lita T  34:30  feeding the bone with the blood Jean  34:32  Right, Lita T  34:33  they can't. They can't come up with something where they can actually Jean  34:36  I'm sure somebody's researching it somewhere.  yeah. Lita T  34:38  yeah, Ron  34:38  Yep Lita T  34:40  Wow. Tara  34:40  Yeah. No, Lita T  34:41  sorry. Tara  34:41  Yeah. Lita T  34:42  Yeah. Are they? I hate to interrupt you, Tara. But are there are there things that you could do to relieve the symptoms or improve your quality of life as you're going through this, you know, like as a person, not medical, Jean  34:58  as an individual Lita T  34:58  as an individual thank you Jean  35:00  No I think, I think we do want medical. Lita T  35:02  Okay. Alright Tara  35:02  Yeah. Well, I can tell you. I can tell you from research that I did as far as exercise goes, low impacts. aquatics is really good. Lita T  35:15  Okay, Tara  35:15   yoga. Another good thing that I found actually has been tremendous for me. Is is keto. Lita T  35:22  What is keto? Tara  35:25  What I eat. Lita T  35:26  Oh, I'm sorry. Okay.  I thought it was a new. I thought it was like a karate. (laughter). Jean  35:32  Okay, okay, stop. Lita T  35:35  I'm sorry. Tara  35:36  No. Keto. So one of the things of one of the challenges is, you know, with your bones, whenever you have a vascular necrosis, it makes it really challenging to be able to work out and get exercise or to go on a hike or things of that nature. Because it's kind of like a tire your bones are, the more you drive, the more your tire wears down. And so with avascular necrosis, it's the more that you walk, the more the bone collapses. Lita T  36:05  Sure, sure. Right. Tara  36:08  And so previous literature, I'd probably have to say and there might be some orthopedics that still recommend it, although I wouldn't.  That say non weight bearing, like Don't, don't walk, try and limit your, your walking and as much as possible, because that will prolong the collapse. But what I found changing my eating too  has allowed me to drop 36 pounds last year. And Jean  36:37 congratulations, Tara  36:38  when I wasn't able to work out and do those things that I used to love to do, like running. You know, Jean  36:47  do you still run in your sleep in your dreams? Is that just me? . Tara  36:52  You know what I do sometimes from from scary PTSD doctors that I've had from my experiences, but yeah, yes, I'm running. Lita T  37:02  Okay. I'm sorry. Is it my turn? Jean  37:05  Yeah, it's your turn Lita T  37:06  Oh okay (laughter) Jean  37:07  go fish. Ron  37:07  Yeah. Lita T  37:08  What? Tara, what role have your family and friends played in your health care journey? Jean  37:13  Yeah. Especially your sister. Um, Tara  37:17  okay. So, my family has been tremendous. Um, my dad and my mom have been my rock. I don't, I would not have been able to make it without them, which I'm not going to go into, like, my past or anything. But it's, it's different from how I grew up. You know, my dad was fighting his demons with the war. But now, he's, he's my rock. Luckily, with COVID because he was in a war veterans home for the past 17 years. And then COVID happened. And I found out that they weren't allowing their workers to wear masks.   And so I had him. Oh, yeah. Yep. Lita T  38:02  Oh! Ron  38:02  What? Wow. Tara  38:05  in April. Yeah, I have that recorded. But anyway, um, Lita T  38:10  what state are you in? Oh, what state are you in? Tara  38:13  I'm in Louisiana, Louisiana right now. So, um, I had him discharged. And so he's been able to be here with me. Although it's been extremely challenging with my stuff, but we've been able to support each other. Lita T  38:31  Support each other Right. Jean  38:32  And it's nice to meet your parents again, as adults, Lita T  38:36  Yes Jean  38:36   you know, to get to know them again. As an adult. Tara  38:39  Yeah, exactly. Yes. And so it's been, um, my family has been amazing. is I don't even know how to say this and dance around it. I probably should have prepared better for that question. Jean  38:57  You could leave in skip it, you can skip it Tara  39:00   Okay, Lita T  39:00  Whatever is comfortable for you. And if you want us to edit this out, we could also edit that part out Jean  39:05  sure. Tara  39:05  Okay, well, let me just say this. I fell into probably one of the darkest places of my life that I've ever been in. I am honestly lucky to be alive. There were days that I didn't know if I would make it if it wasn't my health, bringing me to the brink. My physical health, it was my mental health. And so every single relationship in my life was affected. I'm currently where we stand. My mom and my dad are my support system. And I'm rebuilding everything else. Jean  39:44  Okay. Lita T  39:45  Okay. Ron  39:45  Gotcha Lita T  39:46  All right. Jean  39:47  Yeah. And I talk about mental health and physical health definitely go hand in hand. Lita T  39:51  Yes, for sure. Definitely. Tara  39:53  Absolutely. And when you're fighting for your life, you don't have like a lot of the energy to use On those relationships, so work on those. Lita T  40:03  We understand that Tara  40:03  And so everything is affected, you know, Lita T  40:06  we understand that, yeah. Jean  40:07  And you're in your friends and family have to be very understanding you're not able to do the things you used to do. And they really do have to make an effort. Lita T  40:14  Right? Right. Tara  40:15  Right Lita T  40:15  And some people just can't really put themselves in the shoes of another person that has a chronic illness. Tara  40:23  Right  Yes Lita T  40:24  And it's difficult.  And, you might have to just excuse them and say, well, it's just not within their  Yeah. purview Jean  40:33  Purview?. Tara  40:33  Yeah, wheelhouse Lita T  40:35  right. Right. Right. Ron  40:36  Look, this isn't really part of the script. But I'm just curious in you don't have to answer if you don't want to. Have you been able to see someone or talk to a therapist? Or? Tara  40:47  Oh I have a yes. Yes, Ron  40:50  Okay Tara  40:50   I have. I've had a therapist for probably, like 10 years. Um, who? I call her my life coach, actually. Jean  40:59  Sure. Sure.  Ron  41:00  Right Tara  41:00  She's Wonderful. Lita T  41:01  Yeah. Anybody with a chronic illness? It's causing pain on a non stop basis, I think, personally, should consider a therapist,  Right I know, Ron  41:11  but people look, view it differently.  That's my opinion, But people dance around the question Tara  41:11  Absolutely Lita T  41:17  but personally, Yeah, yeah. My opinion is that it's needed. Jean  41:20  Yeah. Tara  41:20  Yeah, they're, they're such that there is still a stigma, in many ways about therapy and mental health. But honestly, there isn't, even if you don't think that you have a mental health, you know, reason to seek help. We all have things that we could improve on, Lita T  41:39  Sure Ron  41:39  Certainly Tara  41:40   and why, you know, why wouldn't we want to? Lita T  41:43  Right Tara  41:43  That's exactly what a therapist would help you do? You know? So that's just my thoughts. Jean  41:49  Oh absolutely Ron  41:50  Some people have that thought of, these are my feelings I hate for anybody else to know what I'm feeling. I'll just deal with it internally. Tara  41:59  Yeah. Ron  41:59  And, you know, again, I mean, people look at it, people view it, people process it differently. I'm in total agreement with what Lita and Jean Marie and what you're saying about, it's great to talk with someone. But again, because of the stigma and all that a lot of times there's people out there that say, I don't want anybody, Lita T  42:19  right, Ron  42:20  know  what's going on, Jean  42:21  But it is coming into play in more. For example, like with organ transplant, getting counseling is not an option. Ron  42:31  Right Jean  42:31  It's a requirement, Ron  42:32  right? Jean  42:33  And because they realize that you really you, you need assistance, and you need some help. Ron  42:37  Right Jean  42:37  And it's a big deal. And I think the more and more we integrate health and take it in is part of the whole health package, the better it is for everyone. Lita T  42:47  Right. Jean  42:47  And this way it reduces that stigma Lita T  42:48  better. If we would have started that way back when medicine started, Jean  42:52  right, Lita T  42:53  and said, mental health and physical health are hand in hand. And if you go to a doctor, and you're being seen for something that's chronic, I mean, if it's something that's that's short lived, and the doctor fixes you, there's probably but if it's chronic, I think that you should automatically say, well, because of this chronic illness, you automatically, you know, should go to Jean  43:14  it should be included, Lita T  43:14  right? It should be included. Tara  43:16  Yep. No, I was just gonna say I think there needs to be like some type of chronic illness case manager, care manager, and whenever somebody is diagnosed, that they're referred to that person, and there's information that is given to them based especially based off of that condition, and it includes all of what you're saying. Absolutely Lita T  43:34  right, right Tara  43:35  because there is a huge gap, in many ways on in chronic illness, especially rare disease like that. I mean, it takes a good year for somebody just to get their bearings for any condition, Lita T  43:52  right to process it Tara  43:53  You want to make it a rare, a rare disease, and then that it adds to it because there's only a handful of people who actually have the knowledge that you need in order to find the treatment that you need. And oftentimes you have to travel extensively. I've had to travel across the country and figure out financially how you were going to afford it. I've had to get extremely creative. I found a lot of my doctors based off of research articles that I've read, because there wasn't actually an organization for my condition. So it there's so much that needs to be done in this this arena. But all of what you're saying would be great, too. Lita T  44:37  Well, that leads me to my next question. Tara, what is the best advice that you've received for coping with a rare disease and what advice would you give to somebody recently diagnosed with a rare disease? Tara  44:52  The best advice that I received was you have to be kind to yourself and take one day at a time and I know that That really, it really sounds cliche, because you hear, you know, one day at a time, but you get so exhausted, trying to just trying to find the most simplest thing. And all you want to do is like, just find the answers. And you can't even find an answer. That won't even get on people who are misdiagnosed. But it's really easy to get discouraged, and you beat yourself up over things. So I think that that was the best advice that I received for coping, and that to surround yourself with people who will help you see a side of you that you can't see, Lita T  45:43  like to bring out the positive from you. Tara  45:45  Yeah, well, that will remind you of the good in you because you're going to be struggling really hard. You're not going to feel like that person at all. Lita T  45:54  Right. Good advice. Ron  45:56  Yeah absolutely. Tara, how can our listeners learn more about you? And also about AVN? And do you have any, any social media accounts out there that you want to share with us? Tara  46:11  Absolutely. Um, can I go back and answer the rest of the rest of that question though? Lita T  46:17  Oh sure, go back, backtrack! Tara  46:19  Okay. Okay. So, um, because what advice would I give to someone recently diagnosed with a rare disease is, I would say, research online to see if there's a nonprofit for that condition. One of the best places that I have found support is on social media support group. Facebook has so many support groups, and specifically about the a vascular necrosis support group. That's where Dr. Michael Mont, the one that the avascular necrosis guru, every two weeks, he goes on, he does a live q&a, invite anybody on that support group to participate and ask him any question that you want whatsoever? Lita T  47:08  I love that Tara  47:08  Send him your Yep, you can send him your, your, your discs, to look at it, develop a treatment plan for you do all of that for free? Like he is? Yeah, it's amazing. So for any rare disease, I don't know. I wish my other conditions had that type of interaction. But the a vascular necrosis support group does and it's amazing. So I would definitely start with support groups. Social media, look for the nonprofit, associated National Organization for rare disease Nord, is a place to start to, that will lead you to any nonprofits, potentially, to finding help. And another option is research articles. That's how I found a lot of the doctors that I've met and saw, but based off of who wrote the research article, though, but that was my advice. Lita T  48:13  Okay, thank you. How can we learn more about you then? Tara  48:17  More about me, I will, I will send you my social media contact information. And I am actually starting next weekend. I'm going to start documenting my journey. Lita T  48:30  Oh good Ron  48:30  Okay. Lita T  48:31  like a blog. Tara  48:31  Yep Lita T  48:32  And a blog. Okay, great. Tara  48:33  Yeah. Yeah. Yeah, on a blog. Lita T  48:37  Excellent. We'll make sure that we put a link for that in our website. Tara  48:40  Yes. Because I want to hopefully, share and hopefully I can help others that have maybe experienced the same things that I have. Even especially with the surgery that I'm going to have to have too Lita T  48:54  To get ready for, great, excellent idea. Thank you very much. Well, Tara, thank you so much for taking the time to join us today. And we're looking forward to speaking with you in the future about the other issues that you're dealing with. So we'll be scheduling, we'll be scheduling other appointments for you in the future. Tara  49:16  Great, and I'm like, I got my first podcast down and there's nowhere to go, only improve. Right Ron  49:22  (laughter) Tara  49:22  like I'm only gonna get much better. Lita T  49:24  Yes, Ron  49:25  Oh you did fine. Don't worry about it yet fine. Lita T  49:28  We're gonna definitely Tara  49:28  I didn't even Lita T  49:31  we're gonna definitely be pushing this episode into our veterans network so that other veterans and children of veterans will be aware of this as well. Tara  49:42  I'm going to too and that's why I was going to ask you guys for your social all your social media Lita T  49:47  Sure yes Tara  49:48   because I'd already created like the post and I want to post it and Lita T  49:52  Great, great Tara  49:53  report although although I'm really reluctant because I so I wrote down all my answer, like I've rehearsed it. A lot of what I said is not even on what I wrote. Lita T  50:04  Okay, alright  Ron  50:06  Maybe we should  do that Lita T  50:07  (laughter) Tara  50:07  I don't know what happened. I don't know what happened. And I'm like, what I wrote is probably like, a lot better than what I said. And I was like, Oh my God, why did you do that? Lita T  50:16  It always goes that way? It always goes that way. The only reason we use a script is, well, I think it's because of me, I have early onset Alzheimer's. And if I don't have a script in front of me, I forget where we are. I forget who we're talking to, I forget quite a bit. So it keeps me focused. And I think it helps keep us from talking over each other. Because when there's three of us on this side of the microphone, talking to you, it kind of limits how much we're talking over each other. So it helps us Jean  50:48  And I tend to ramble. Tara  50:49  Okay Lita T  50:51  (laughter) Ron  50:51  And I guess I tend to interrupt. Jean  50:53  Yeah. Tara  50:56  So if I tell you that I had the script in front of me, will that scare you? Lita T  51:00  No, Ron  51:00  not at all Jean  51:01  no, no, no. Tara  51:02  Ok Cause I had it in front of me. And I still rambled and went off topic. And I'm like, and I didn't even do it. And I was like, Oh, my God, Ron  51:09  You're all good. Lita T  51:10  I'm glad you did, because it turned out wonderfully. Ron  51:13  Yeah, Lita T  51:13  Thank you very much. Ron  51:14  And actually, we do appreciate you coming on the show this morning and sharing your story with us. Quite interesting to say the least. Lita T  51:22  Oh yeah! Ron  51:23  And I'm sure that all of our listeners out there, learned a lot from this episode. Lita T  51:27  I learned a lot. Jean  51:28  I did too! Ron  51:28  And we're looking forward to having you come on in the future to talk about some of the other conditions that you had mentioned earlier. Tara  51:36  Yeah. And I have like, so I have so much better documentation that I could provide? Lita T  51:44  Well, you know, what you could do is you could send me those links through email. Jean  51:48  We can add them to our Pinterest Page Lita T  51:50  When I when I build the website, I don't know if you're aware of this, but you'll get your own page on our website. And then I put links for everything that you would like, on our on your website page. And this way people Tara  52:03  Awesome! Lita T  52:03   can go right there. Yes, Jean  52:05  Yeah And then we'll have a Pinterest page for you as well. And it'll have direct links to any research that you'd like to cite or any documents or articles. Lita T  52:13  Right, right. Jean  52:16  Awesome, so good because I have all of those, like, I have the whole slew of medical, even research and citations and everything Lita T  52:26  exactly Tara  52:26  and even stuff about Agent Orange, so. Lita T  52:28  Right Very important to include. Yeah, Ron  52:32  right. Right, right. Okay, well, thank you again. If our listeners have any questions or comments related to today's show, they can contact us at podcast dx@yahoo.com through our website, podcast dx.com on Facebook, Twitter, Pinterest, or Instagram. Jean  52:50 And if you have a moment to spare, please give us a review wherever you get your podcast. As always, please keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or a qualified healthcare provider with any questions you may have regarding medical condition or treatment before undertaking a new health care routine and never disregard professional medical advice or delay in seeking you because of something you've heard on this podcast. Lita T  53:09 Till next week.  

Subscribe to Murder and More on iHeartRadio - http://ihr.fm/2Zk1oCNSubscribe on Stitcher - http://bit.ly/3baduDSSubscribe everywhere else - http://bit.ly/2Nrbi2GAccording to Mencap, a learning disability is “a reduced intellectual ability and difficulty with everyday activities which affects someone for their whole life.” Typically, it can take a person with a learning disability longer to learn new things and they may need extra help to develop new skills or interact with others. Around 1.5 million people in the UK have a learning disability and 351,000 of these are children aged between 0-17. There are different conditions that make a person more likely to have a learning disability. The majority of people with Down’s Syndrome and Williams Syndrome will more than likely have some level of learning disability. About half of people with Autism or Asperger’s Syndrome will have a form of learning disability. Different types of learning disability exist, with some people presenting with only mild symptoms which makes it slightly more difficult to diagnose. Other people may have moderate or even severe learning disabilities and these people may need significantly more help, including with personal care, mobility and communication. Learning disabilities often get confused with learning difficulties, which umbrella conditions such as ADHD and dyslexia however it is possible for a person to have both a learning disability and a learning difficulty.Follow us on Twitter and Tumblr (@murderandmore), Instagram (@murderandmorepod) and Facebook (Murder and More Podcast/@mandmpod). View the sources and pictures for this episode at http://www.murderandmorepodcast.wordpress.com. Become a patron of Murder and More by heading to http://www.patreon.com/murderandmore. Buy merch at http://www.teepublic.com/murder-and-more. Buy me a coffee at http://www.ko-fi.com/murderandmore. Music: Leave Without Me, Atmospheric Piano Backing and Beautiful Piano Theme, https://purple-planet.com.Follow Murder and More on Social MediaTwitter - http://www.twitter.com/murderandmoreInstagram - http://www.instagram.com/murderandmorepodFacebook - http://www.facebook.com/mandmpod~~~~~~~~~~~Indie Drop-InAll content legally licensed from the original creator. Thank you to () for the great episode. You can find Indie Drop-In at https://indiedropin.comSubscribe to our Patreon and Help us support Indie Creatorshttps://patreon.com/indiedropinTwitter: https://twitter.com/indiedropinInstagram: https://instagram.com/indiedropinFacebook: https://facebook.com/indiedropinAny advertising found in this episode is inserted by Indie Drop-In and not endorsed by the Creator.If you would like to have your show featured go to http://indiedropin.com/creators~~~~~~~~~~~

Subscribe to Murder and More on iHeartRadio - http://ihr.fm/2Zk1oCNSubscribe on Stitcher - http://bit.ly/3baduDSSubscribe everywhere else - http://bit.ly/2Nrbi2GAccording to Mencap, a learning disability is “a reduced intellectual ability and difficulty with everyday activities which affects someone for their whole life.” Typically, it can take a person with a learning disability longer to learn new things and they may need extra help to develop new skills or interact with others. Around 1.5 million people in the UK have a learning disability and 351,000 of these are children aged between 0-17. There are different conditions that make a person more likely to have a learning disability. The majority of people with Down's Syndrome and Williams Syndrome will more than likely have some level of learning disability. About half of people with Autism or Asperger's Syndrome will have a form of learning disability. Different types of learning disability exist, with some people presenting with only mild symptoms which makes it slightly more difficult to diagnose. Other people may have moderate or even severe learning disabilities and these people may need significantly more help, including with personal care, mobility and communication. Learning disabilities often get confused with learning difficulties, which umbrella conditions such as ADHD and dyslexia however it is possible for a person to have both a learning disability and a learning difficulty.Follow us on Twitter and Tumblr (@murderandmore), Instagram (@murderandmorepod) and Facebook (Murder and More Podcast/@mandmpod). View the sources and pictures for this episode at http://www.murderandmorepodcast.wordpress.com. Become a patron of Murder and More by heading to http://www.patreon.com/murderandmore. Buy merch at http://www.teepublic.com/murder-and-more. Buy me a coffee at http://www.ko-fi.com/murderandmore. Music: Leave Without Me, Atmospheric Piano Backing and Beautiful Piano Theme, https://purple-planet.com.Follow Murder and More on Social MediaTwitter - http://www.twitter.com/murderandmoreInstagram - http://www.instagram.com/murderandmorepodFacebook - http://www.facebook.com/mandmpod~~~~~~~~~~~Indie Drop-InAll content legally licensed from the original creator. Thank you to () for the great episode. You can find Indie Drop-In at https://indiedropin.comSubscribe to our Patreon and Help us support Indie Creatorshttps://patreon.com/indiedropinTwitter: https://twitter.com/indiedropinInstagram: https://instagram.com/indiedropinFacebook: https://facebook.com/indiedropinAny advertising found in this episode is inserted by Indie Drop-In and not endorsed by the Creator.If you would like to have your show featured go to http://indiedropin.com/creators~~~~~~~~~~~

Showing love for others is an emotion that gets taken for granted at times. We seem to lack authenticity when love is necessary to let another person feel like they matter. Callie Truelove has lived all of her short life making sure that everyone she meets must be shown that they are special in every way. Born with Williams Syndrome, a genetic disorder that affects many parts of the body, Callie has many challenges to contend with, but that has never stopped her gregarious, outgoing nature.Life Without Limits is broadcast live at 9pm ET Mondays on W4WN Radio – The Women 4 Women Network (www.w4wn.com) part of Talk 4 Radio (www.talk4radio.com) on the Talk 4 Media Network (www.talk4media.com). This podcast is also available on Talk 4 Podcasting (www.talk4podcasting.com).

Rachel Nau discusses how Williams Syndrome shapes the way she engages with the world.  Vance Crowe interviewed his longtime friend about how this condition has impacted her life, making friends and working in a job.Rachel Nau is a woman with a rare genetic condition called "Williams Syndrome" which makes her have extraordinary perceptions of sound and light, but also prevents her from knowing who is safe to trust, vulnerable to getting lost and has made it difficult for her to learn complex tasks.About the Vance Crowe Podcast — Vance Crowe interviews people with an expertise that you would want to know about, but might not think to ask. He prompts his guests to think about their work in novel ways, discusses how it applies to regular people and has fun sharing stories and experiences.Want to support the podcast? Join the Articulate Ventures Network | https://network.articulate.ventures/ —We are a patchwork of thinkers that want to articulate ideas in a forum where they can be respectfully challenged, improved and celebrated so that we can explore complex subjects, learn from those we disagree with and achieve our personal & professional goals.Contact Vance for a Talk | https://www.vancecrowe.com/ —Vance delivers speeches that reveal important aspects of human communication.  Audiences are entertained, engaged, and leave feeling empowered to change something about the way they are communicating.  Vance tells stories about his own experiences, discusses theories in ways that make them relatable and highlights interesting people, books, and media that the audience can learn even more from. Join the #ATCF Book Club | https://articulate.ventures/category/atcf-book-club

This week, a mini-holiday mashup. First, associate producer Robert Scaramuccia brings us the story of Aaron Hartman, a Jewish man from Atlanta, GA with Williams Syndrome, and his very unique pandemic birthday present. We also bring you a Hanukkah gift guide that includes products our listeners make themselves! Find these suggestions and more by joining our Facebook group. Join the hosts Wednesday, Dec. 2 at 7 p.m. E.S.T. for the Museum of Jewish Heritage’s Generation to Generation event, which is honoring the Butnick family. Stephanie will be interviewing Michael Zegen from The Marvelous Mrs. Maisel, and the band Golem will be performing. Register at bit.ly/butnickfam. Celebrate the first night of Hanukkah with Stephanie, Mayim Bialik, and G.L.O.W. star Jackie Tohn at NuRoots’ “First Night” event, Thursday, Dec. 10 at 7 p.m. P.S.T. Register at  nuroots.org/firstnight. Let us know what you think of the show! Send us comments and questions at unorthodox@tabletmag.com, or leave us a voicemail at (914) 570-4869. You can also record a voice memo on your smartphone and email it to us. Subscribe to our weekly newsletter to get new episodes, photos, and more. Get a behind-the-scenes look at our recording sessions on our YouTube channel! Follow Unorthodox on Twitter and Instagram. Get your Unorthodox T-shirts, mugs, and baby onesies at bit.ly/unorthoshirt. Shalom, friends Learn more about your ad choices. Visit megaphone.fm/adchoices

***This episode is brought to you by PodGo, the easiest way to monetise your podcast. Sign up today at podgo.co***According to Mencap, a learning disability is “a reduced intellectual ability and difficulty with everyday activities which affects someone for their whole life.” Typically, it can take a person with a learning disability longer to learn new things and they may need extra help to develop new skills or interact with others. Around 1.5 million people in the UK have a learning disability and 351,000 of these are children aged between 0-17. There are different conditions that make a person more likely to have a learning disability. The majority of people with Down’s Syndrome and Williams Syndrome will more than likely have some level of learning disability. About half of people with Autism or Asperger’s Syndrome will have a form of learning disability. Different types of learning disability exist, with some people presenting with only mild symptoms which makes it slightly more difficult to diagnose. Other people may have moderate or even severe learning disabilities and these people may need significantly more help, including with personal care, mobility and communication. Learning disabilities often get confused with learning difficulties, which umbrella conditions such as ADHD and dyslexia however it is possible for a person to have both a learning disability and a learning difficulty. Follow us on Twitter and Tumblr (@murderandmore), Instagram (@murderandmorepod) and Facebook (Murder and More Podcast/@mandmpod). View the sources and pictures for this episode at www.murderandmorepodcast.wordpress.com. Become a patron of Murder and More by heading to www.patreon.com/murderandmore. This episode's promo is Lady Justice. Music: Leave Without Me, Atmospheric Piano Backing and Beautiful Piano Theme, https://purple-planet.com.

Erin and his wife Lisa found themselves contemplating a life-changing decision. In this episode, Erin dives into their journey in becoming foster parents to two young children at a time in their lives they were finding a sense of normalcy within supporting a child with Williams Syndrome - a syndrome impacting both physical health and developmental aspects - as well as the challenges that come with becoming a new parent.  With the incredibly big hearts Erin and Lisa have, they chose to undoubtedly and unconditionally step forward as the “foster” parents to two children needing a loving home. The oldest of the two was close in age to their own son and they already had a relationship with him, as he was in the same classroom as their son. Upon saying yes to supporting him, they were made aware of his younger sister (under 1 year) needing a home as well. This decision changed the course of all of their lives; they became a cohesive family, knowing the challenges would be tough, but well worth the fight.   Erin and Lisa have found themselves advocating for Developmentally delayed foster youth, particularly those with more complex and challenging needs, as a result of their work. They have stepped forward in a way that is thought-provoking and often a foundation for change within our systemic structures. Having more providers like Erin and Lisa, our foster system would become a place where children would begin to thrive.

Dr Katie Cebula is a developmental psychologist at the University of Edinburgh whose research explores family relationships, particularly sibling relationships in families with a child with developmental disabilities. During this podcast she chats to Sue Fletcher-Watson about a piece of research that explores sibling relationships when one child has Williams syndrome.You can follow Katie on Twitter here.The paper discussed in this episode is: Cebula, K., Gillooly, A., Coulthard, L. K., Riby, D. M., & Hastings, R. P. (2019). Siblings of children with Williams syndrome: Correlates of psychosocial adjustment and sibling relationship quality. Research in developmental disabilities, 94, 103496.

Dr Vic Simms is a developmental psychologist at Ulster University who specialises in cognitive development, specifically mathematical thinking. During this podcast she chats to Dr Sue Fletcher-Watson from the Salvesen Mindroom Research Centre at the University of Edinburgh about a piece of work looking at mathematics skills in individuals with Williams Syndrome and Down Syndrome.You can follow Vic on twitter here. This is the paper discussed in this episode:Simms, V., Karmiloff-Smith, A., Ranzato, E., & Van Herwegen, J. (2020). Understanding Number Line Estimation in Williams Syndrome and Down Syndrome. Journal of Autism and Developmental Disorders, 50(2), 583-591.

A short and sweet conversation between Carrie and her friend Danielle Noth, who was born with one less chromosome than many of us. D talks about her favorite movies and love for music and Carrie shares a few specific ways Danielle’s grit & sensitivity has lightened the load of her own suffering. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/carrie-schuessler/support

A new book from Clive Wynne (founder of the Canine Science Collaboratory at Arizona State University) claims that dogs are, indeed, capable of “love” as we would define it. Wynne's research suggests that dogs are not very bright compared to other animals, but are separated due to their “hyper sociability.” Wynne has observed substantial spikes in Oxytocin (the bonding chemical) when dogs stare into human eyes. It should be noted that in 2009 geneticist Bridgett vonHoldt discovered that dogs have a mutation responsible for Williams syndrome often found in humans. Williams Syndrome is also characterized by intellectual limitations, extreme friendliness, and a desire for interpersonal connection. Philosophical question: Are animals capable of love? --- Send in a voice message: https://anchor.fm/buzzerpodcast/message

Merrie Kaplan loved Christmas. Born with a rare genetic conditions, Williams Syndrome, Merrie was known as a friendly, outgoing woman, who brought joy to all. Now, her memory has given birth to an effort to extend that joy to families throughout Central Georgia’s 14-county area. ‘The MERRIE Christmas Project,’ aims to provide gifts, holiday décor, and food to families in need during the Christmas season. Joining Nancy Grace today:Mike and Nancy Kaplan, Merrie's parentsJamie Kaplan, Director of Philanthropy, United Way of Central GeorgiaGeorge McCanless, President and CEO, United Way of Central GeorgiaUnited Way of Central Georgia is accepting donations for ‘The MERRIE Christmas Project’ here.

A native El Pasoan, Kieran Johnson was born with a rare genetic disorder known as Williams Syndrome. This developmental disorder affects many parts of the body. Typically characterized by mild to moderate intellectual or learning problems, unique personality characteristics, and heart and blood vessel (cardiovascular) problems, it only affects 1 in 10,000 people worldwide. This is his story. This audio is part of a larger article at San Eli News: News, Sports and More from San Elizario, Texas.

Learn about why engineers designed a robot that can imagine itself; why the Great Compression was the best time to be alive, financially speaking; and the ups and downs of a rare genetic condition that makes you incredibly loving. In this podcast, Cody Gough and Ashley Hamer discuss the following stories from Curiosity.com to help you get smarter and learn something new in just a few minutes: Engineers Created a Robot That Can Imagine Itself — https://curiosity.im/2DgC8BW Financially Speaking, the Best Time to Be Alive Was During the Great Compression — https://curiosity.im/2Dj6nIl The Rare Genetic Condition That Makes You Incredibly Loving Isn't What It Sounds Like — https://curiosity.im/2DhO5r9 If you love our show and you're interested in hearing full-length interviews, then please consider supporting us on Patreon. You'll get exclusive episodes and access to our archives as soon as you become a Patron! https://www.patreon.com/curiositydotcom Download the FREE 5-star Curiosity app for Android and iOS at https://curiosity.im/podcast-app. And Amazon smart speaker users: you can listen to our podcast as part of your Amazon Alexa Flash Briefing — just click “enable” here: https://curiosity.im/podcast-flash-briefing.

We're back from Thanksgiving! Sit down and listen as Megan talks about her journey to Hope College, her time as a part of Hope's Ready For Life program, and what it's been like living with Williams Syndrome. Become a supporter of this podcast: https://anchor.fm/talesofhope/support

In this weeks episode of What's Cookin' Charlie, Josh and Yono sit down with their first guest, the world famous Jaydog. Jaydog is a pro BMXer and the current NASS Fakie World Champion. Jaydog answers some questions sent in by fans, aswell as talking about growing up with Williams Syndrome and loads more

Science & U! is back for another show featuring stories on spinal cord injuries, Climate Change, Williams Syndrome plus an in studio visit with astrophysicist Jackie Faherty discussing gravitational waves!

Karen Berman of the National Institutes of Health explores how studying Williams Syndrome is revealing biological mechanisms that confer human variability. Series: "CARTA - Center for Academic Research and Training in Anthropogeny" [Science] [Show ID: 32440]

Karen Berman of the National Institutes of Health explores how studying Williams Syndrome is revealing biological mechanisms that confer human variability. Series: "CARTA - Center for Academic Research and Training in Anthropogeny" [Science] [Show ID: 32440]

Karen Berman of the National Institutes of Health explores how studying Williams Syndrome is revealing biological mechanisms that confer human variability. Series: "CARTA - Center for Academic Research and Training in Anthropogeny" [Science] [Show ID: 32440]

Karen Berman of the National Institutes of Health explores how studying Williams Syndrome is revealing biological mechanisms that confer human variability. Series: "CARTA - Center for Academic Research and Training in Anthropogeny" [Science] [Show ID: 32440]

Karen Berman of the National Institutes of Health explores how studying Williams Syndrome is revealing biological mechanisms that confer human variability. Series: "CARTA - Center for Academic Research and Training in Anthropogeny" [Science] [Show ID: 32440]

Karen Berman of the National Institutes of Health explores how studying Williams Syndrome is revealing biological mechanisms that confer human variability. Series: "CARTA - Center for Academic Research and Training in Anthropogeny" [Science] [Show ID: 32440]

What would it be like to see everyone as a friend?

Dan & Kody are back from San Diego and offer their final thoughts on the convention. OJ Simpson got paroled. Is this a good thing? What could go wrong? Kody discusses a very rare disease found in humans called Williams Syndrome. We then talk about a a clown hotel and how cool it would be to own a haunted house/establishment! Email - DanAndKodyPodcast@gmail.com Contribute To our Patreon! Patreon - http://bit.ly/DKPatreon Follow us on social media - @DanKodyPodcast ! Facebook - https://www.facebook.com/DanKodyPodcast Dan & Kody Podcast Twitter - https://www.twitter.com/dankodypodcast Dan & Kody Podcast Instagram - https://www.instagram.com/dankodypodcast/ Kody Twitter - https://www.twitter.com/kody_frederick Dan Twitter - https://www.twitter.com/danieljhill More ways to listen! Apple Podcasts - http://apple.co/2pHBg1K Google Play Music - http://bit.ly/2nfhuYK Stitcher - http://bit.ly/2pNANxL Youtube - http://bit.ly/2o12zXD Our Sponsor! JC Room Blocks - http://www.jcroomblocks.com/ ** Prop Store** - https://propstore.com/

Fifty-three-year-old Mark Riccio talks to his friend, Erica Lynne in this week’s StoryCorps of southwest Florida about having Williams Syndrome and his love for singing and sailing. Riccio says he knows his parents are scared of letting him go but he also fears being lonely.

The human mind is one of the features that makes our species unusual, and any narrative of our origins must include explanations for how our mental facilities were generated by genetic and cultural evolutionary processes. Comparative studies with the minds of other species and direct studies of how the typical human brain creates the mind are valuable approaches. However, many useful clues can also be gleaned from studying extraordinary variations of the human mind. This Symposium brings together experts who have pursued in-depth explorations of some of these variations. Series: "CARTA - Center for Academic Research and Training in Anthropogeny" [Science] [Show ID: 32436]

The human mind is one of the features that makes our species unusual, and any narrative of our origins must include explanations for how our mental facilities were generated by genetic and cultural evolutionary processes. Comparative studies with the minds of other species and direct studies of how the typical human brain creates the mind are valuable approaches. However, many useful clues can also be gleaned from studying extraordinary variations of the human mind. This Symposium brings together experts who have pursued in-depth explorations of some of these variations. Series: "CARTA - Center for Academic Research and Training in Anthropogeny" [Science] [Show ID: 32436]

The human mind is one of the features that makes our species unusual, and any narrative of our origins must include explanations for how our mental facilities were generated by genetic and cultural evolutionary processes. Comparative studies with the minds of other species and direct studies of how the typical human brain creates the mind are valuable approaches. However, many useful clues can also be gleaned from studying extraordinary variations of the human mind. This Symposium brings together experts who have pursued in-depth explorations of some of these variations. Series: "CARTA - Center for Academic Research and Training in Anthropogeny" [Science] [Show ID: 32436]

The human mind is one of the features that makes our species unusual, and any narrative of our origins must include explanations for how our mental facilities were generated by genetic and cultural evolutionary processes. Comparative studies with the minds of other species and direct studies of how the typical human brain creates the mind are valuable approaches. However, many useful clues can also be gleaned from studying extraordinary variations of the human mind. This Symposium brings together experts who have pursued in-depth explorations of some of these variations. Series: "CARTA - Center for Academic Research and Training in Anthropogeny" [Science] [Show ID: 32436]

The guys discuss the pros and cons of Williams Syndrome, listener emails about bipolar dating and front-running sports fans, and a free screenplay idea involving Kim and Kanye using a surrogate. Plus, which 71-year-old is doing a worse job: Phil Jackson or Donald Trump? And wtf is up with growlers? No, really.

The medical community has an obligation to protect vulnerable populations, speaking up for any group that may not be able to advocate for themselves, and patients with Down, Turner, and Williams syndrome certainly fall into this category. Yet one facet of their health – one that could vastly improve quality of life – often goes overlooked. There is a high prevalence of celiac disease among individuals with Down, Turner, and Williams syndrome, and it is recommended that these patients get tested annually. Unfortunately, many of the symptoms of celiac disease are attributed to the syndrome instead, and gluten sensitivity goes undiagnosed. Today Nadine shares several case studies as well as her own experience working with patients with developmental delays. She covers the high incidence of celiac disease and non-celiac gluten sensitivity in Down, Turner, and Williams syndrome patients, the signs and symptoms of gluten damage, and the importance of annual screening in this population. What’s Discussed:  The prevalence of celiac disease and non-celiac gluten sensitivity in individuals with Down, Tuner and Williams syndrome Annual testing is recommended Signs and symptoms can be eliminated with a gluten-free diet Tiffany’s story Williams syndrome patient Suffered from stage 4 liver failure and diabetes Endured cracked, bleeding skin and fluid in the abdomen Tested positive for celiac disease Gluten-free diet resolved most of her symptoms Alternatives to the standard blood test that could reveal non-celiac gluten sensitivity in Down syndrome patients The anti-gliadin antibody (AGA) is an excellent biomarker In a study published in the World Journal of Gastroenterology, 41% of Down syndrome patients had AGA antibodies  The importance of testing family members A mother who is malnourished during pregnancy may have a child with Down, Turner or Williams syndrome Celiac disease may disrupt fetal development The overlap of celiac disease and Down syndrome Study found that 18 of 284 subjects ages two to 15 tested positive for celiac disease In another study, 11 of 47 had positive blood tests Symptoms of celiac disease and non-celiac gluten sensitivity Diarrhea Abdominal pain Gas Bloating Constipation Short stature Brittle bones Osteoporosis Osteopenia Thyroid issues Anemia Type 1 diabetes Skin rash Decreased appetite Yeast overgrowth Lichen planus Difficulty swallowing Nadine’s story of an autistic patient Sweet gentleman who lived in group home Suffered from diabetes, repeated infections and self-harm Paleo diet made him calmer, didn’t irritate his throat He enjoyed an improved quality of life Cases of asymptomatic celiac disease in children with Down syndrome Study published in the International Journal of Pediatrics Toddlers screened at around 24 months Biopsy proven celiac disease identified in 3-9% of children with Down syndrome Not all patients with positive screens receive a biopsy if asymptomatic One child in the study gained weight and energy on a gluten-free diet A second child had less constipation and diarrhea Follow-up study reported that 66% had health improvement Resources Mentioned: “Screening for Celiac Disease in Down’s Syndrome Patients Revealed Cases of Subtotal Villous Atrophy Without Typical for Celiac Disease HLA-DQ and Tissue Transglutaminase Antibodies” from the World Journal of Gastroenterology “Prevalence of Celiac Disease in Down’s Syndrome” from the European Journal of Gastroenterology and Hepatology “Asymptomatic Celiac Disease in Children with Trisomy 21 at 26 Months of Age or Less” from the International Journal of Pediatrics Other Resources: “Celiac Disease” from the Pediatric Gastroenterology Board Review Manual “The Coexistence of Down Syndrome and a Triad Consisting of: Coeliac Disease, Insulin Dependent Diabetes Mellitus and Congenital Hypothyroidism” from Down Syndrome Research and Practice “Coeliac Disease in Williams Syndrome” from the Journal of Medical Genetics “Turner Syndrome and Celiac Disease: A Case-Control Study” from Pediatrics Connect with Nadine:  Instagram Facebook Contact via Email Books by Nadine: Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

"The Pea Green Boat" provides a unique and nurturing place to hear stories about how it feels to be excluded, mocked, and bullied because you’re different, in color or ability – or how it feels to be accepted despite those differences. This week, Annie talks to Claire Carmody, a teenager with Williams Syndrome , and her mom, Jen Carmody, about the advantages and challenges of the disorder.

In Special Chronicles Podcast Episode 183, Daniel Smrokowski sits down with Sam and Katie Boland from the Williams syndrome community.  We discuss: Katie on the gifts of Williams syndrome; Williams syndrome Camps, music, & Fine Motor Skills; Family & Connections at Williams syndrome Conventions; Katie's joy of music; Impact on Williams syndrome community; Resources online to check … Continue reading SCP183: The Gifts of Williams syndrome The post SCP183: The Gifts of Williams syndrome first appeared on Special Chronicles.

Did you know that May is Williams Syndrome Awareness Month? Williams syndrome is a genetic condition characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.  People with Williams Syndrome also tend to have enhanced verbal abilities, highly social personalities and an affinity for music.  It effects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. We interview Amy Connell-Donohue, the mother of 11 year old Emerson who was diagnosed with Williams Syndrome when she was 1.  Amy shares her road to diagnosis and the challenges of finding out that your child is not  typical. She also shares lessons from Emerson and says that she's the glue that holds the family together. Amy's article about her family is in the May issue of Chicago Parent, it's titled Having it All. We know Emerson personally and she is dear to our heart!  Learn more about Williams Syndrome here: http://williams-syndrome.org/ Whispering Trails Music Therapy Camp  https://www.youtube.com/watch?v=gF4DiqEdN3w Other Resources: Click here to find Cathy's books The Self-Aware Parent 1 & 2, click here to find her blog, and click here to find her Chicago Parent column. Todd has a few spots opening for his Men's Group.  Email me @ comments@zenparentingradio.com Tree of Life Chiropractic Care have some interesting workshops planned.  An outline can be found here. If you shop Amazon by going through our website first (there is an amazon link on the bottom right hand of our home page), a portion of your sale will help fund our Be U program.  Thanks for supporting us! Check out our new website & be sure to sign up to get all new podcast sent direct to your inbox @ ZPR. We would love to hear any comments from the show by sending us an email @ comments@zenparentingradio.com You can be sure to hear more by liking our Facebook page @ https://www.facebook.com/ZenParenting How important is a good smile?  Just ask our new partner John J Kelly DDS.  They are located on the northwest side of Chicago and will meet all of your family's dental needs. Painting or remodeling?  Don't forget about our parnter Avid Co.

Did you know that May is Williams Syndrome Awareness Month? Williams syndrome is a genetic condition characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.  People with Williams Syndrome also tend to have enhanced verbal abilities, highly social personalities and an affinity for music.  It effects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. We interview Amy Connell-Donohue, the mother of 11 year old Emerson who was diagnosed with Williams Syndrome when she was 1.  Amy shares her road to diagnosis and the challenges of finding out that your child is not  typical. She also shares lessons from Emerson and says that she's the glue that holds the family together. Amy's article about her family is in the May issue of Chicago Parent, it's titled Having it All. We know Emerson personally and she is dear to our heart!  Learn more about Williams Syndrome here: http://williams-syndrome.org/ Whispering Trails Music Therapy Camp  https://www.youtube.com/watch?v=gF4DiqEdN3w Other Resources: Click here to find Cathy's books The Self-Aware Parent 1 & 2, click here to find her blog, and click here to find her Chicago Parent column. Todd has a few spots opening for his Men's Group.  Email me @ comments@zenparentingradio.com Tree of Life Chiropractic Care have some interesting workshops planned.  An outline can be found here. If you shop Amazon by going through our website first (there is an amazon link on the bottom right hand of our home page), a portion of your sale will help fund our Be U program.  Thanks for supporting us! Check out our new website & be sure to sign up to get all new podcast sent direct to your inbox @ ZPR. We would love to hear any comments from the show by sending us an email @ comments@zenparentingradio.com You can be sure to hear more by liking our Facebook page @ https://www.facebook.com/ZenParenting How important is a good smile?  Just ask our new partner John J Kelly DDS.  They are located on the northwest side of Chicago and will meet all of your family's dental needs. Painting or remodeling?  Don't forget about our parnter Avid Co.

Did you know that May is Williams Syndrome Awareness Month? Williams syndrome is a genetic condition characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.  People with Williams Syndrome also tend to have enhanced verbal abilities, highly social personalities and an affinity for music.  It effects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. We interview Amy Connell-Donohue, the mother of 11 year old Emerson who was diagnosed with Williams Syndrome when she was 1.  Amy shares her road to diagnosis and the challenges of finding out that your child is not  typical. She also shares lessons from Emerson and says that she's the glue that holds the family together. Amy's article about her family is in the May issue of Chicago Parent, it's titled Having it All. We know Emerson personally and she is dear to our heart!  Learn more about Williams Syndrome here: http://williams-syndrome.org/ Whispering Trails Music Therapy Camp  https://www.youtube.com/watch?v=gF4DiqEdN3w Other Resources: Click here to find Cathy's books The Self-Aware Parent 1 & 2, click here to find her blog, and click here to find her Chicago Parent column. Todd has a few spots opening for his Men's Group.  Email me @ comments@zenparentingradio.com Tree of Life Chiropractic Care have some interesting workshops planned.  An outline can be found here. If you shop Amazon by going through our website first (there is an amazon link on the bottom right hand of our home page), a portion of your sale will help fund our Be U program.  Thanks for supporting us! Check out our new website & be sure to sign up to get all new podcast sent direct to your inbox @ ZPR. We would love to hear any comments from the show by sending us an email @ comments@zenparentingradio.com You can be sure to hear more by liking our Facebook page @ https://www.facebook.com/ZenParenting How important is a good smile?  Just ask our new partner John J Kelly DDS.  They are located on the northwest side of Chicago and will meet all of your family's dental needs. Painting or remodeling?  Don't forget about our parnter Avid Co.

Recent research in Current Biology finds that the ability to recognize faces is most likely heritable. Christie Nicholson reports

Join pediatric speech-language pathologist Laura Mize and developmental interventionist Kate Hensler as they discuss questions from 2 different speech-language pathologists who need new ideas for treating 4 specific children on their caseloads: 1. A 3 year old boy with Williams Syndrome who responds best to music - We'll be talking about how to use music in a preschool classroom as well as in therapy sessions to maximize his communication skills. 2. A little boy diagnosed with selective mutism who at school talks only in “nonsense” to his best friend with Down Syndrome. 3. 5 year old on the PDD spectrum who is severely echolalic and who likes to play with bubbles. 4. A gifted and talented kindergarten student with poor rate and intonation is poor. He speaks very slowly and in a drawn out way and his intonation goes in highs and lows out of nowhere.

From the 2007/2008 Distinguished Lecturer Series.

From the 2007/2008 Distinguished Lecturer Series.