Podcasts about national down syndrome congress

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Best podcasts about national down syndrome congress

Latest podcast episodes about national down syndrome congress

Down Syndrome Center of Western Pennsylvania Podcast
#197 - National Down Syndrome Congress (NDSC)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Mar 13, 2025 21:53


The Executive Director of the National Down Syndrome Congress, Jim Hudson, joined the podcast to talk about the upcoming NDSC Convention and let us know about the important work that the organization is doing. For more information: NDSC https://www.ndsccenter.org NDSC Convention Registration https://tools.eventpower.com/reg/index/85y7aP2xy5 NDSC Policy and Advocacy https://www.ndsccenter.org/political-advocacy/take-action-stay-informed/   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. We are thankful for the generous donation from Caring for Kids – The Carrie Martin Fund that provides the funding for the podcast recording equipment and hosting costs for this podcast.

executive director caring advocacy national down syndrome congress jim hudson
Your Child's Brain
Down syndrome and the impact of a longer life span

Your Child's Brain

Play Episode Listen Later Nov 7, 2024 29:53


We humans, typically, have 23 pairs of chromosomes. Sometimes, for a variety of reasons, we have an extra chromosome or we are missing one. Down syndrome, also known as Trisomy 21, is a genetic disorder that occurs when an individual has a full or partial extra copy of their 21st chromosome. Down syndrome is the most frequent of the chromosomal disorders in humans, occurring in approximately 1 in 700 births in the US. With improved care of often life-threatening clinical challenges, individuals with Down syndrome are living much longer. In this month's podcast of Your Child's Brain we are going to talk about Down Syndrome and especially focus on how the increased lifespan of those with Down syndrome is impacting treatment and research for people living with this diagnosis.   Resources · Down Syndrome Association of Maryland (dsamd.org) · National Down Syndrome Society (ndss.org) · National Down Syndrome Congress (ndsccenter.org) · Global Down Syndrome Foundation (https://www.globaldownsyndrome.org) · LuMind IDSC Foundation (https://lumindidsc.org) · NIH – research plan across the LifeSpan - Project INCLUDE for co-occurring medical conditions (www.nih.gov/include-project) · Eunice Kennedy Shriver National Institute of Child Health and Human Development (nih.gov) · National Task Group on Intellectual Disabilities and Dementia Practices - Intellectual Disabilities and Dementia Resources | The NTG (the-ntg.org)See omnystudio.com/listener for privacy information.

Your Hope-Filled Perspective with Dr. Michelle Bengtson podcast
250 Unmasking the Unexpected: A Guide to Coping with Unforeseen Events

Your Hope-Filled Perspective with Dr. Michelle Bengtson podcast

Play Episode Listen Later Jan 25, 2024 37:22


Episode Summary: Life doesn't always go as planned, but that doesn't mean we can't navigate the twists and turns. Join me with Jillian Benfield for a guide to coping with unforeseen events—gaining insights into the beauty of vulnerability, the healing process, and finding strength in unexpected places. Learn how to turn unforeseen events into stepping stones for personal growth. Quotables from the episode: When unexpected events hit our lives, we realize just how fragile we really are. Unforeseen events are the gateway to living more vulnerable. For me, grief looks like good pastoral counsel, reading, digging into my faith, and figuring out what I really believed. Asking “why” lets us wrestle with God which is an intimate process that helps us to figure out what we really believe. Overcoming is a stance that means to suppress and “get over it” whereas undergoing means we admit we need help, seek help, confront the pain, and work through the healing process. We need to come to the truthful realization that success and worth are not attached. Unforeseen events provide the opportunity to become more connected to Jesus who suffered for us and with us. There are two primary paths to transformation: great love or great suffering.   Scripture References: Psalm 13:1-6 NIV “How long, O LORD?  Will You forget me forever?  How long will You hide Your face from me? How long must I wrestle in my soul, with sorrow in my heart each day? How long will my enemy dominate me? Consider me and respond, O LORD my God. Give light to my eyes, lest I sleep in death, lest my enemy say, “I have overcome him,” and my foes rejoice when I fall. But I have trusted in Your loving devotion; my heart will rejoice in Your salvation. I will sing to the LORD, for He has been good to me. John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”   Recommended Resources:  The Gift of the Unexpected: Discovering Who You Were Meant to be When Life Goes Off Plan by Jillian Benfield The Hem of His Garment: Reaching Out to God When Pain Overwhelms by Dr. Michelle Bengtson YouVersion 5-Day Devotional Reaching Out To God When Pain Overwhelms   Today is Going to be a Good Day: 90 Promises to Start Your Day Off Right by Dr. Michelle Bengtson, winner of the AWSA 2023 Inspirational Gift Book of the Year Award, the Christian Literary Awards Reader's Choice Award in four categories, and the Christian Literary Awards Henri Award for Devotionals YouVersion 7-Day Devotional, Today is Going to be a Good Day YouVersion 7-Day Devotional, Today is Going to be Another Good Day Breaking Anxiety's Grip: How to Reclaim the Peace God Promises by Dr. Michelle Bengtson Breaking Anxiety's Grip Free Study Guide Free 7-Day YouVersion Bible Reading Plan for Breaking Anxiety's Grip Hope Prevails: Insights from a Doctor's Personal Journey Through Depression by Dr. Michelle Bengtson, winner of the Christian Literary Award Reader's Choice Award Hope Prevails Bible Study by Dr. Michelle Bengtson, winner of the Christian Literary Award Reader's Choice Award Trusting God Through Cancer 1 Trusting God Through Cancer 2 Revive & Thrive Women's Conference Subdue Stress and Anxiety: Fifteen Experts Offer Comprehensive Tools in Ten Minutes a Day. Use my link plus discount code BENG99 to save $90 on course (course will be $99.) Free Download: How To Fight Fearful/Anxious Thoughts and Win   Social Media Links for Guest and Host: Connect with Jillian Benfield: Website / Instagram / Facebook For more hope, stay connected with Dr. Bengtson at: Order Book Breaking Anxiety's Grip / Order Book Hope Prevails  /  Website  /  Blog  /  Facebook / Twitter (@DrMBengtson)  /  LinkedIn  /  Instagram / Pinterest / YouTube Guest: Jillian Benfield is a former journalist and news anchor. She holds a broadcast journalism degree from the University of Georgia. As a freelance writer, her essays about living an unexpected life have appeared on sites such as TODAY, Good Morning America, Yahoo! News, and ABC News. Jillian regularly advocates for the full inclusion of people with disabilities in her writings, community, and as a part of the National Down Syndrome Congress's National Down Syndrome Advocacy Coalition. Jillian and her husband, Andy, and their three children make their home on Florida's Space Coast.   Hosted By: Dr. Michelle Bengtson Audio Technical Support: Bryce Bengtson  

End Seclusion Podcast
How to Conduct a Virtual or In-Person Hill Visit: Building Champions to End Seclusion and Restraint

End Seclusion Podcast

Play Episode Listen Later Oct 28, 2023 70:04


Interested in learning how to advocate for federal legislation prohibiting the use of restraint and seclusion in schools? Join us for a virtual training by two experts in federal advocacy on how to engage in this advocacy on Capitol Hill. All skill levels are welcome!As a Partner at Stride Policy Solutions, Laura Kaloi provides strategic policy, advocacy, partnership-building, and communications expertise to nonprofit clients and is a leader in the education, disability, and child advocacy communities. She advises clients on policy and advocacy issues impacting children and families. Laura has a deep passion for improving access to education, career training, and independent living for all individuals. She has written and spoken extensively on federal education, special education, and workforce laws. Prior to becoming a consultant, Laura led the public affairs teams for nonprofit policy and advocacy organizations, including the National Center for Learning Disabilities, the American Health Quality Association, and HealthInsight. She worked in the U.S. Congress early in her career as a legislative assistant to the late U.S. Congressman James V. Hansen. Laura holds a bachelor's degree from the University of Utah and a master's in public administration from Brigham Young University.Cyrus Huncharek is the Policy and Advocacy Director for the National Down Syndrome Congress. Before joining NDSC, Cyrus was a Senior Public Policy Analyst at the National Disability Rights Network (NDRN) where he oversaw several policy areas impacting people with disabilities. Prior to his work at NDRN, Cyrus worked as a Government Affairs Coordinator for the National Parent Teacher Association (National PTA), taught high school English in South Dakota through Teach For America, and served as a Learning and Development intern for the White House Office of Administration where he developed e-learning courses for executive office employees. He holds a B.A. in Government from the University of Texas at Austin. Cyrus' experience as a classroom teacher and prior work on special education policy motivates him to now work toward an improved world for individuals with Down syndrome.Support the show

Anchored by the Sword
Jillian Benfield's Freedom Story!

Anchored by the Sword

Play Episode Listen Later Oct 13, 2023 24:12


On today's episode, Jillian Benfield talks about her life and the unexpected twists and turns it has taken. She talks about her childhood experiences with church and how there was a lot of "rule following" and not as much grace. She said she became agnostic for about 12 years until she began dating her husband. That is when she began to ask the difficult questions and met the real Jesus of the Bible, not the shiny Jesus. Then we get into the story of her son, Anderson, which is discussed in her book, The Gift of the Unexpected. His diagnosis of Down's Syndrome changed the trajectory of her life. She said that "Jesus's life became more real to me when a child with a disability entered my home." I loved this conversation with her and I pray it encourages you to look at events or things that have happened in your life in a brand new light, maybe for the first time. Bio: Jillian Benfield is a former journalist and news anchor. She holds a broadcast journalism degree from the University of Georgia. As a freelance writer, her essays about living an unexpected life have appeared on sites such as TODAY, Good Morning America, Yahoo! News, and ABC News. Jillian regularly advocates for the full inclusion of people with disabilities in her writings, in her community, and as a part of the National Down Syndrome Congress's National Down Syndrome Advocacy Coalition. Jillian and her husband, Andy, and their three children make their home on Florida's Space Coast. Anchor Verse: Psalm 13 Connect with Jillian: Website: http://jillianbenfield.com  IG: https://instagram.com/jillianbenfieldblog FB: https://www.facebook.com/jillianbenfield ***This podcast is a proud member of the Spark Network! It is a network of Christian podcasts that cover so many different topics!  Head over to: https://www.sparkmedia.ventures/spark-network#/ to find more amazing podcasts!!***

This Undivided Life
#170:Jillian Benfield The Gift of The Unexpected

This Undivided Life

Play Episode Listen Later Oct 3, 2023 32:39


Jillian Benfield (www.jillianbenfield.com) is a former journalist and news anchor. She holds a broadcast journalism degree from the University of Georgia. As a freelance writer, her essays about living an unexpected life have appeared on sites such as TODAY, Good Morning America, Yahoo! News, and ABC News. Jillian regularly advocates for the full inclusion of people with disabilities in her writings, community, and as a part of the National Down Syndrome Congress's National Down Syndrome Advocacy Coalition. Jillian and her husband, Andy, and their three children make their home on Florida's Space Coast.

Finding Something Real
When Life Doesn't Go the Way You Expected with Jillian Benfield

Finding Something Real

Play Episode Listen Later Jul 12, 2023 55:01


Happy Wednesday, friends! We hope you are having a wonderful Summer! Today on the podcast, Dagmar joins Janell as we welcome Jillian Benfield. Jillian shares her faith journey and about how the events of her life encouraged her to write a book about embracing the unexpected. She shares about the grief and emotions she experienced when she found out that she was expecting a son with disabilities and how she experienced peace and God's presence at the time of his birth. The group also talks about how the Psalms relate to our relationship with God, how God brings life in our circumstances, and why resurrection is a theme of this life, not just the life to come. We hope you enjoy! About JillianJillian is a former journalist and news anchor. She holds a broadcast journalism degree from the University of Georgia. As a freelance writer, her essays about living an unexpected life have appeared on sites such asTODAY,Good Morning America,Yahoo! News, andABC News. Jillian regularly advocates for the full inclusion of people with disabilities in her writings, in her community, and as a part of the National Down Syndrome Congress's NationalDown Syndrome Advocacy Coalition. Jillian and her husband, Andy, and their three children make their home on Florida's Space Coast.___________________We would love to thank our Patrons for all their amazing support! To learn more about supporting Finding Something REAL via Patreon, click here!To learn more about Faithful Counseling and if it is a good fit for you, you can click here!Dagmar's previous FSR episodesJillian's websiteThe Gift of the Unexpected - Jillian BenfieldMere Christianity - C. S. LewisTim Keller Romans 8:28 (NIV)And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

A Cup of Gratitude
Season Six - Episode 2 - Finding Gratitude Embracing the Unexpected

A Cup of Gratitude

Play Episode Listen Later Jul 10, 2023 53:12


This week I speak with Jillian Benfield a former journalist and news anchor. She holds a broadcast journalism degree from the University of Georgia. As a freelance writer, her essays about living an unexpected life have appeared on sites such as TODAY, Good Morning America, Yahoo! News, and ABC News. Jillian regularly advocates for the full inclusion of people with disabilities in her writings, community, and as a part of the National Down Syndrome Congress's National Down Syndrome Advocacy Coalition. Jillian and her husband, Andy, and their three children make their home on Florida's Space Coast. During our interview, we look back at her childhood to the present finding the beautiful thread of God working in her life! You won't want to miss this incredible episode!Website: jillianbenfield.comInstagram: @JillianBenfieldBlogFacebook: /jillianbenfieldBook on Amazon: https://www.amazon.com/Gift-Unexpected-Discovering-Were-Meant/dp/0764240498/*Theme Music "Blessed Time" by Ketsa

Water Prairie Chronicles Podcast
Episode #58: From Hunger Games to Children's Books: The Unstoppable Sofia Sanchez!

Water Prairie Chronicles Podcast

Play Episode Listen Later Apr 26, 2023 32:50


Show Notes: In this inspiring and heartwarming episode of the Water Prairie Chronicles podcast, Tonya interviews Jennifer Varanini Sanchez and her daughter, Sofia Sanchez. Sofia, who has Down Syndrome, is a child model, actress, and voiceover actor. Sofia and Jennifer share about their experience filming the Hunger Games movie, The Ballad of Songbirds and Snakes, and some of Sofia's favorite memories of being on set. The conversation also touches on their experiences traveling to multiple countries and immersing themselves in the local cultures. Sofia's achievements in modeling and acting have inspired and given hope to many parents of children with disabilities who believe that their children can achieve their dreams. Jennifer and Sofia talk about how they began working with children's book author Margaret O'Hare to write four children's books that promote inclusion, acceptance, and love in families, regardless of what they look like. Jennifer and Sofia's story is one of resilience, passion, and hard work. Their experiences in modeling, acting, traveling, and writing have shown that anything is possible with determination and support. The episode is a must-listen for anyone looking for inspiration and motivation to pursue their dreams, no matter their circumstances. Connect with Jennifer and Sofia: Instagram: Jennifer: @thesanchezsix Sofia: @the.sofia.sanchez Sofia's website: www.Sofia-Sanchez.com The Iceland Project Information: justlikeyoumovement.org Donate to the Iceland project: https://bit.ly/SofiaIceland Purchase Sofia's Books: (* As an Amazon Associate I may earn a commission on sales made by using these links.) You Are Loved You Are Enough Ride the Wave Love Sofia and Haole the Surf Dog BeYOUtiful Love Sofia Resources for Down Syndrome Families: Global Down Syndrome Foundation - https://www.globaldownsyndrome.org/ National Down Syndrome Society - http://www.ndss.org/ National Down Syndrome Congress - https://www.ndsccenter.org/ Gigi's Playhouse - https://gigisplayhouse.org/ Down Syndrome Diagnosis Network - https://www.dsdiagnosisnetwork.org/ Connect with Us: https://linktr.ee/waterprairie Support this channel: https://www.buymeacoffee.com/waterprairie MOTHERS DAY BOOK BUNDLE GIVEAWAY! Grab your chance to win 2 signed books about Sofia Sanchez, a teen actress, model, and advocate for Down syndrome! Go to https://waterprairie.com/giveaway for details! Get a BONUS entry by answering some questions about this podcast episode: https://forms.gle/Lwo6B8cH1Drw8dyR8 Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Water Prairie Chronicles Podcast
Episode #57: Beyond the Diagnosis: The Realities and Myths of Down Syndrome

Water Prairie Chronicles Podcast

Play Episode Listen Later Apr 18, 2023 22:03


Show Notes: What if you were told that Down syndrome is not something to fear, but rather something to celebrate? In this inspiring episode of the Water Prairie Chronicles podcast, host Tonya Wollum welcomes Jennifer Varanini Sanchez and her daughter Sofia Sanchez, who reminds the world that Down syndrome is not scary. Jennifer and her husband have three sons, the youngest of whom also has Down syndrome. The family adopted Sofia when she was under two years old from an orphanage in Ukraine. Jennifer has since become a Down syndrome and adoption advocate. In this episode, Jennifer shares their experiences with early intervention services, individualized education programs, and inclusive education. Jennifer also provides recommendations for new parents of children with Down syndrome and shares valuable resources for families. Tune in to learn how Sofia is breaking down stereotypes and thriving as an eighth grader who attends school, plays sports, and is involved in a community theater production. Get ready to be inspired and uplifted by this heartwarming interview! Connect with Jennifer and Sofia: Instagram: Jennifer: @thesanchezsix Sofia: @the.sofia.sanchez Sofia's website: www.Sofia-Sanchez.com Purchase Sofia's Books: (* As an Amazon Associate I may earn a commission on sales made by using these links.) You Are Loved You Are Enough Resources Mentioned: Global Down Syndrome Foundation - https://www.globaldownsyndrome.org/ National Down Syndrome Society - http://www.ndss.org/ National Down Syndrome Congress - https://www.ndsccenter.org/ Gigi's Playhouse - https://gigisplayhouse.org/ Down Syndrome Diagnosis Network - https://www.dsdiagnosisnetwork.org/ Connect with Us: https://linktr.ee/waterprairie Support this channel: https://www.buymeacoffee.com/waterprairie MOTHERS DAY BOOK BUNDLE GIVEAWAY! Grab your chance to win 2 signed books about Sofia Sanchez, a teen actress, model, and advocate for Down syndrome! Go to https://waterprairie.com/giveaway for details! Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Love Is Stronger Than Fear
World Down Syndrome Day and Unexpected Gifts with Jillian Benfield

Love Is Stronger Than Fear

Play Episode Listen Later Mar 21, 2023 49:59 Transcription Available


On World Down Syndrome Day, Jillian Benfield, author of The Gift of the Unexpected, talks with me about whether it is hard to be the parent of a child with a disability, how our perspective on ourselves, faith, and the world has changed through our experiences as parents, and about the gift of the unexpected.__Guest Bio:“Jillian Benfield is a former journalist and news anchor. She holds a broadcast journalism degree from the University of Georgia. Her essays about living an unexpected life have appeared on sites such as TODAY, Good Morning America, Yahoo! News, and ABC News. Jillian regularly advocates for the full inclusion of people with disabilities in her writings, in her community, and as a part of the National Down Syndrome Congress's National Down Syndrome Advocacy Coalition. Jillian and her husband, Andy, and their three children make their home on Florida's Space Coast.”__Connect Online:Website: jillianbenfield.comInstagram: @JillianBenfieldBlogFacebook: @jillianbenfieldTwitter: @JillianBenfield____On the Podcast:Book: The Gift of the Unexpected: Discovering Who You Were Meant to Be When Life Goes Off PlanThe Journey by Adam HamiltonDown Syndrome Diagnosis NetworkTranscript* and more are available at: https://amyjuliabecker.com/jillian-benfield/__Season 6 of the Love Is Stronger Than Fear podcast connects to themes in my latest book, To Be Made Well, which you can order here! Learn more about my writing and speaking at amyjuliabecker.com.*A transcript of this episode will be available within one business day on my website, and a video with closed captions will be available on my YouTube Channel.Connect with me: Instagram Facebook Twitter Website Thanks for listening!

Rising Above Podcast
Jillian Benfield: The Gift of the Unexpected

Rising Above Podcast

Play Episode Listen Later Mar 14, 2023 30:31


About Jillian Jillian Benfield is a former journalist and news anchor. She holds a broadcast journalism degree from the University of Georgia. As a freelance writer, her essays about living an unexpected life have appeared on sites such as TODAY, Good Morning America, Yahoo! News, and ABC News. Jillian regularly advocates for the full inclusion of people with disabilities in her writings, in her community, and as a part of the National Down Syndrome Congress's National Down Syndrome Advocacy Coalition. Jillian and her husband, Andy, and their three children make their home on Florida's Space Coast. Learn more at jillianbenfield.com.   Favorite Quotes "I believe that pain and suffering in our unexpected circumstances is one of the greatest pathways to transformation, but we have to choose to really walk it." -Jillian   Related Links The Gift of the Unexpected jillianbenfield.com

Special Education Advocacy with Ashley Barlow
Celebrating the Unexpected and Undergoing Transformation with Jillian Benfield

Special Education Advocacy with Ashley Barlow

Play Episode Listen Later Mar 14, 2023 43:58


Chances are you've experienced the Unexpected, and if you've stuck around here in the make-lemonade place that I've created, you have probably embraced the Unexpected as a Gift. Today I welcome author, blogger, and speaker Jillian Benfield, whose relatable book, “The Gift of the Unexpected,” explores how she unpacked her son's Down syndrome diagnosis during a time of transition in her life. My favorite part is when Jillian and I discuss her explanation of how we undergo hardship rather than overcoming it. I'm telling you – it's deep, and it's beautiful! Have a listen today! Transcript: https://share.descript.com/view/8sxy0FeREto Meet my guest:Jillian Benfield is a former journalist and news anchor. She holds a broadcast journalism degree from the University of Georgia. As a freelance writer, her essays about living an unexpected life have appeared on sites such as TODAY, Good Morning America, Yahoo! News, and ABC News. Jillian regularly advocates for the full inclusion of people with disabilities in her writings, in her community, and as a part of the National Down Syndrome Congress's National Down Syndrome Advocacy Coalition. Jillian and her husband, Andy, and their three children make their home on Florida's Space Coast. Learn more at jillianbenfield.com.Instagram: https://www.instagram.com/jillianbenfieldblogFacebook: https://www.facebook.com/jillianbenfield/

Sprinkled with Hope
188- Undergoing the Unexpected with Jillian Benfield

Sprinkled with Hope

Play Episode Listen Later Mar 2, 2023 25:16


Undergoing Transformation: Mother of Child with Disabilities Shares How God Uses Unexpected Seasons When unexpected moments change life's trajectory, we're left with a choice: Do we overcome the unexpected, as the world recommends, or undergo it? Author Jillian Benfield says undergoing an unexpected season begins a transformation that deconstructs our old self and reconstructs us into who God intends us to become. In her book The Gift of the Unexpected, Jillian uses her own life-altering moment—her son's Down syndrome and congenital heart defect diagnoses— to encourage readers not to gloss over the hard parts of the human condition. Instead, she says, undergoing the unexpected gives us the opportunity to let go of our old selves, tearing down false beliefs about our identities, humanity, and the divine. “Intense. Stunning. Needed. Jillian's words will help you discover beauty in the unexpected.” Leslie Means, creator of Her View From Home In a culture where the prosperity gospel (control) and the American dream (achievement) are glorified, God uses the unexpected to disorient us from the ideals of Western society. His surprising gift equips believers to relate to the world's pain and recognize how our worth and purpose rest in Him. “I believe your unexpected moment, your unexpected life, holds the same potential for you,” Jillian writes. “But only if you resist society's instance on overcoming the unexpected and choose instead to undergo it.” The Gift of the Unexpected releases with Bethany House on January 17, 2023. Jillian Benfield is a former journalist and news anchor. She holds a broadcast journalism degree from the University of Georgia. As a freelance writer, her essays about living an unexpected life have appeared on sites such as TODAY, Good Morning America, Yahoo! News, and ABC News. Jillian regularly advocates for the full inclusion of people with disabilities in her writings, in her community, and as a part of the National Down Syndrome Congress's National Down Syndrome Advocacy Coalition. http://jillianbenfield.com/ Connect with us on social media: https://www.youtube.com/channel/UCKvKY93BmNp9D-uuStspcEQ https://www.facebook.com/sprinkledwithhopepodcast https://twitter.com/sprinkledhope20 https://www.instagram.com/sprinkledwithhopejason_shane/ email : info@sprinkledwithhope.com

Brave Together
Overcoming vs. Undergoing with Jillian Benfield

Brave Together

Play Episode Listen Later Jan 25, 2023 28:41


The day we found out our child's diagnosis lives in all of us. It is a marker of a major shift in our journey as human beings. Who we are, how we feel, what we know, all began to change that day. And society will tell us to “overcome” that experience or look on the “bright side” of whatever that diagnosis brought us, but what if that doesn't feel possible?Today host, Jessica Patay, interviews mom, Jillian Benfield, about her journey becoming mother to her son, Anderson. Jillian has written a book called The Gift of the Unexpected, in which she uses her own life-altering moment—her son's Down syndrome and congenital heart defect diagnoses— to encourage readers not to gloss over the hard parts of the human condition. In this interview she introduces us to the idea of “undergoing” the diagnosis, instead of “overcoming” it, as well as many other helpful insights. Jillian Benfield is a former journalist and news anchor. She holds a broadcast journalism degree from the University of Georgia. As a freelance writer, her essays about living an unexpected life have appeared on sites such as TODAY, Good Morning America, Yahoo! News, and ABC News. Jillian regularly advocates for the full inclusion of people with disabilities in her writings, in her community, and as a part of the National Down Syndrome Congress's National Down Syndrome Advocacy Coalition. Jillian and her husband, Andy, and their three children make their home on Florida's Space Coast. Learn more about Jillian here. Find Jillian's book here. Brave Together is the podcast for We are Brave Together, a not-for-profit organization based in the USA. The heart of We Are Brave Together is to strengthen, encourage, inspire and validate all moms of children with disabilities and other needs in their unique journeys. JOIN the international community of We Are Brave Together here.Donate to our Retreats and Respite Scholarships here.Donate to keep this podcast going here.Can't get enough of the Brave Together Podcast?Follow our Instagram Page @wearebravetogether or on Facebook.Feel free to contact Jessica Patay via email: jpatay@wearebravetogether.orgIf you have any topic requests or if you would like to share a story, leave us a message here.Please leave a review and rating today! We thank you in advance!

Think Inclusive Podcast
Ashley Barlow | Perfectly Imperfect Advocacy

Think Inclusive Podcast

Play Episode Listen Later Jan 12, 2023 56:05


For this episode, I speak with Ashley Barlow, a special education attorney advocate and host of the podcast Special Education Advocacy with Ashley Barlow. In a former life, she was a German teacher in Jefferson County Public Schools and Cincinnati Public Schools, having taught nearly every grade from K to 12. Ashley practices statewide in Kentucky and also operates a business to empower and inspire parents and advocates in special education, which can be found at www.ashleybarlowco.com. She is also the Director of Education at the National Down Syndrome Congress. We did something a little different for this episode. Ashley and I interviewed each other and are posting the same interview on our respective podcasts. Cool right? We discuss several things related to inclusive education, including … what inclusive ed really means and using Dear Colleague Letters as a strategy in IEP meetings. Thanks for listening, and if you haven't already, please give us a ⭐⭐⭐⭐⭐ review on Apple Podcasts or Spotify.Otter.ai Transcript: https://otter.ai/u/JiXRvYh8mFPHeFaGzeV6mM7Z5pkPDF Transcript: https://3bd6e695-b492-4878-afa9-f79d8b09e0c4.usrfiles.com/ugd/3bd6e6_5b131ba558eb4a168d1623daddbfaa29.pdfShow Notes: https://bit.ly/TI-Ashley-BarlowCover Art Image Description: black background; think inclusive logo in the top left; rainbow-colored waves overlayed with a headshot of Ashley Barlow; text reads: Ashley Barlow, Perfectly Imperfect Advocacy; S10E12; MCIE logo in the bottom rightCreditsThink Inclusive is written, edited, and sound designed by Tim Villegas and is produced by MCIE.Original music by Miles Kredich.Support Think Inclusive by becoming a patron! Hosted on Acast. See acast.com/privacy for more information.

Down Syndrome Center of Western Pennsylvania Podcast
#139 - National Down Syndrome Congress (NDSC)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Sep 2, 2022 17:58


Jordan Kough, Executive Director of the National Down Syndrome Congress, joined the podcast as part of our "Meet the Nationals" series.  To learn more about the NDSC, go to http://ndsccenter.org. If you have a podcast topic you would like us to address, please send an e-mail to DownSyndromeCenter@chp.edu.  If you would like to partner with the Down Syndrome Center and the work that we do, including this podcast, please go to http://givetochildrens.org/downsyndromecenter.  

executive director nationals down syndrome national down syndrome congress
Brave Together
5 Traits of Effective Parents in Special Education

Brave Together

Play Episode Listen Later Jun 9, 2021 38:22


On this episode of the Brave Together podcast, Jessica speaks with Ashley Barlow, an SPED  Attorney and Advocate about the top 5 traits that can help parents be effective in advocating for kids during their journeys through the education system. In a former life, Ashley was a German teacher in Jefferson County Public Schools and Cincinnati Public Schools, having taught nearly every grade from K to 12.  She also taught Real Estate and Business Law at Miami University. Her areas of practice now include special education, family law, estate planning, and probate. She serves on the State Advisory Board for Exceptional Children in Kentucky, the National Down Syndrome Advocacy Coalition at the National Down Syndrome Congress and the Education Advisory Board and the Government Affairs Committee at the Down Syndrome Association of Greater Cincinnati (past president of the Board).  She participated in the Institute of Special Education at William and Mary College of Law in 2016, returning for the Alumni Track in 2017 and serving as faculty in 2020.  She also holds an Advanced Advocacy Certificate from the Council of Parents Attorneys and Advocates. Ashley practices state wide in Kentucky and Ohio, and when not working, she is normally at the pool with her husband and two sons, one of whom has Down syndrome.  Learn more about her practice and webinars at ashleybarlowco.com. Ashley is on Facebook and IG, and also has a podcast called Special Education Advocacy.Brave Together Podcast is sponsored by BetterHelp, an organization working to make professional counseling accessible, affordable, convenient - so anyone can get help, anytime, anywhere from the world's largest network of licensed, accredited, and experienced counselors.  For a 10% discount off of your first month, visit www.betterhelp.comwearebravetogether. 

The Cost of Care
9. We Asked, You Replied: Listener Submissions Special

The Cost of Care

Play Episode Listen Later Jun 3, 2021 43:40


From the start of our show, we’ve asked listeners to share stories about navigating the American health care system. Today, David talks with those of you who have had to fight for health care in order to manage chronic illnesses, secure gender-affirming surgeries, and help children receive developmental therapies for Down Syndrome. Resources from the episode: Planned Parenthood transgender identity terms and labels: https://www.plannedparenthood.org/learn/gender-identity/transgender/transgender-identity-terms-and-labels GLAAD transgender glossary of terms: https://www.glaad.org/reference/transgender JAMA article on the association between gender-affirming surgery and mental health: https://jamanetwork.com/journals/jamasurgery/article-abstract/2779429 National Down Syndrome Society resources for finding support: https://www.ndss.org/lifespan/finding-support/ National Down Syndrome Congress local and national support networks: https://www.ndsccenter.org/programs-resources/affiliate-organizations/local-and-national-support-networks/ American College of Obstetricians and Gynecologists endometriosis resources: https://www.acog.org/womens-health/faqs/endometriosis Johns Hopkins Crohn’s resources: https://www.hopkinsmedicine.org/gastroenterology_hepatology/diseases_conditions/faqs/crohns_disease.html Cancer Care breast cancer resources: https://www.cancercare.org/diagnosis/breast_cancer Keep up with David on twitter @CHIDavidSmith. Share your feedback! Email us at costofcare@lemonadamedia.com or leave us a voicemail at 833-453-6662. Support for this episode of The Cost of Care comes from Healthline.com, America’s leading digital health brand. Visit healthline.com/costofcare now, and stay connected by following @healthline on Instagram, Facebook and Twitter. Healthline: Powering healthy actions and supporting you on your journey to well-being. Support for this podcast comes from The Commonwealth Fund, a health care research foundation working to improve the U.S. health system. Visit commonwealthfund.org/costofcare, and stay connected by following us on Twitter, LinkedIn, and Instagram. Commonwealth Fund: Affordable, quality health care. For everyone. You can click this link for a full list of current sponsors and discount codes for this show and all Lemonada shows. To follow along with a transcript and/or take notes for friends and family, go to https://www.lemonadamedia.com/show/thecostofcare/ shortly after the air date. Stay up to date with us on Twitter, Facebook, and Instagram at @LemonadaMedia.See omnystudio.com/listener for privacy information.

Down Syndrome Center of Western Pennsylvania Podcast
#104 - Become an Ally for Advocacy (with Jawanda and Rachel Mast)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later May 25, 2021 20:38


Dr. Vellody was joined today by Jawanda and Rachel Mast who came to speak about the importance of national level policy and advocacy.  They also discussed the National Down Syndrome Congress' Ally for Advocacy campaign, and how we can get involved. https://www.ndsccenter.org/support-get-involved/campaign/

advocacy mast national down syndrome congress
Down Syndrome Center of Western Pennsylvania Podcast
#101 - 2021 NDSC Convention (with Sarah Hill)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later May 7, 2021 17:54


Dr. Vellody is joined by Sarah Hill who is the Convention Director for the National Down Syndrome Congress.  The 2021 NDSC Convention is a one-of-a-kind opportunity for families and self-advocates to get information on Down syndrome.  This year's NDSC Convention will be virtual and offer loads of opportunities for attendees that are discussed on this podcast.  To learn more or to register for the NDSC Convention, go to https://www.ndsccenter.org/annual-convention/.

convention sarah hill national down syndrome congress
Arroe Collins
Noel Paul Stookey Releases The Album Just Causes

Arroe Collins

Play Episode Listen Later Mar 31, 2021 11:34


In the Spirit of "Giving Back" Noel Paul Stookey, better known as the "Paul" of the seminal 1960s folk trio Peter, Paul & Mary, continues to embrace his role as an elder statesman of what was once referred to as "protest music." On March 22, Neworld Multimedia will release JUST CAUSES, a carefully curated compilation of 15 Stookey tracks, each bearing a theme of social concern. Freshly remixed and remastered by John Stuart, Stookey has paired each song in the collection with an appropriate designated non-profit organization to benefit from the album's net proceeds. Stookey, who has enjoyed a career that includes over 50 albums, both as part of the legendary trio and as a solo artist, continues his commitment to creating socially relevant music and to giving back. "Every songwriter eventually realizes that his art is meant for service: to entertain, inform and in a best-case scenario, to inspire," he explains. "As I look over the fifty plus years that I've attempted to capture 'lightening in a bottle' - a moment realized in a song that transcends time - I recognize that some musical creations seem to have a longer life because they address issues that still challenge us, no matter the generation." The concept for JUST CAUSES took shape quickly. "I was literally picking up groceries at our local store when I noticed for the umpteenth time that Paul Newman's brand of products from his Newman's Own company advertise on the packaging that '100% of profits go to charity,'" he explains. "I thought what a great concept and what the term 'profits' means in my life. I've been very fortunate in my musical pursuits, and the idea of 'giving back' at this point in my life and career struck a chord with me." JUST CAUSES addresses many of the issues that continue to plague our world, among them hunger, reproductive rights, immigration, missing children, safe energy, drug addiction and the environment. The title, Stookey explains, "indicates that the album contains not only those songs that share a commonality of mutual concern and intent, but also that those concerns are well-founded in a search for justice." He couples his song "The Connection," which describes the link between terrorist funding and drug trafficking, with the Partnership to End Addiction. "Danny's Downs" tells the moving story of a family discovering the blessing that comes with the welcoming of a Down Syndrome child into their lives, and the National Down Syndrome Congress has been paired with it. He includes his poignant "Jean Claude," a Holocaust tale told from the standpoint of a survivor's haunting memory, and has chosen the Dallas Holocaust & Human Rights Museum as its designated charity. His rollicking "Revolution (1x1)," which has been serviced to folk radio deejays as a focus track, is a new kind of protest song: Written six years after the horror of 9/11, "it may seem naive to have assumed that global peace and understanding could flow from something as commonplace as a friendly greeting to a stranger," he explains. "I believe that making the world a better place for all peoples calls for an investment of personal kindness." As the song suggests: I'm gonna start a revolution; I'm gonna take it to the street, I'm gonna smile at every solitary person that I meet! I'm gonna wave at total strangers no matter where they're from. I'm gonna start a revolution. gonna win it one by one. Check it out here: https://www.revolution1x1.org/ The designated charity for "Revolution (1x1)" is Sojourners, the faith-based organization that promotes the integration of spiritual renewal and social justice. Stookey's powerful rendition of "America the Beautiful," complete with two original verses he wrote, is paired with People for The American Way, the progressive advocacy organization founded by television producer Norman Lear to encourage civic participation and defend fundamental rights. He has also paired the song "Not That Kind of Music" with the non-profit initiative Music to Life, which he founded in 2001 with his daughter Liz Stookey Sunde to fund the work of other socially responsible artists through technology, entertainment, artist collaboration and education. The organization recently released its own compilation CD of 15 artists whose work they support called Hope Rises. Stookey grew up in the Midwest, where he played electric guitar in his high school rock 'n' roll band, and he moved to New York City at the age of 20 in search of independence. What he found was a burgeoning folk music scene and the "Peter" and "Mary" who would become his partners in the adventure of a lifetime. Via signature vocal harmonies and socially conscious songs like "If I Had a Hammer," the anti-war "Where Have All the Flowers Gone" and "Blowin' in the Wind," which gave early national exposure to then fledgling songwriter Bob Dylan, Peter, Paul & Mary's music penetrated every corner of the country. Their first album reached the top of the charts and stayed there for two years. They sang at the White House as well as intimate coffeehouses and large stadiums. When Martin Luther King Jr. delivered his "I Have a Dream" speech at the 1963 March on Washington, it was Peter, Paul and Mary who sang. In 1970, after years of playing 200-plus shows annually, the group took a much-needed sabbatical, providing Noel and his family a chance to relocate to the idyllic coast of Maine. While the group reunited a decade later, Noel used the hiatus and the reduced touring schedule to hone his solo canon, beginning with the release of his PAUL AND album, the first of some 20 solo album projects. His "Wedding Song (There Is Love)" from PAUL AND was a major chart hit and became a staple for-what else-weddings. JUST CAUSES is Stookey's latest album, his first since 2018, and perhaps the most concise attempt to curate music that speaks to making the world a better place. His focus as a songwriter has been to further his role as an activist and create music of conscience and concern. JUST CAUSES serves as a succinct showcase for his convictions. In addition to creating music projects of his own, Stookey oversees Neworld Multimedia, presenting new artists and creating children's TV shows and music. The royalties from "Wedding Song" go to the Public Domain Foundation, where nearly $2 million has already been put to work for charitable causes. He hopes that JUST CAUSES will continue in this tradition.

Arroe Collins
Noel Paul Stookey Releases The Album Just Causes

Arroe Collins

Play Episode Listen Later Mar 31, 2021 11:34


In the Spirit of "Giving Back" Noel Paul Stookey, better known as the "Paul" of the seminal 1960s folk trio Peter, Paul & Mary, continues to embrace his role as an elder statesman of what was once referred to as "protest music." On March 22, Neworld Multimedia will release JUST CAUSES, a carefully curated compilation of 15 Stookey tracks, each bearing a theme of social concern. Freshly remixed and remastered by John Stuart, Stookey has paired each song in the collection with an appropriate designated non-profit organization to benefit from the album's net proceeds. Stookey, who has enjoyed a career that includes over 50 albums, both as part of the legendary trio and as a solo artist, continues his commitment to creating socially relevant music and to giving back. "Every songwriter eventually realizes that his art is meant for service: to entertain, inform and in a best-case scenario, to inspire," he explains. "As I look over the fifty plus years that I've attempted to capture 'lightening in a bottle' - a moment realized in a song that transcends time - I recognize that some musical creations seem to have a longer life because they address issues that still challenge us, no matter the generation." The concept for JUST CAUSES took shape quickly. "I was literally picking up groceries at our local store when I noticed for the umpteenth time that Paul Newman's brand of products from his Newman's Own company advertise on the packaging that '100% of profits go to charity,'" he explains. "I thought what a great concept and what the term 'profits' means in my life. I've been very fortunate in my musical pursuits, and the idea of 'giving back' at this point in my life and career struck a chord with me." JUST CAUSES addresses many of the issues that continue to plague our world, among them hunger, reproductive rights, immigration, missing children, safe energy, drug addiction and the environment. The title, Stookey explains, "indicates that the album contains not only those songs that share a commonality of mutual concern and intent, but also that those concerns are well-founded in a search for justice." He couples his song "The Connection," which describes the link between terrorist funding and drug trafficking, with the Partnership to End Addiction. "Danny's Downs" tells the moving story of a family discovering the blessing that comes with the welcoming of a Down Syndrome child into their lives, and the National Down Syndrome Congress has been paired with it. He includes his poignant "Jean Claude," a Holocaust tale told from the standpoint of a survivor's haunting memory, and has chosen the Dallas Holocaust & Human Rights Museum as its designated charity. His rollicking "Revolution (1x1)," which has been serviced to folk radio deejays as a focus track, is a new kind of protest song: Written six years after the horror of 9/11, "it may seem naive to have assumed that global peace and understanding could flow from something as commonplace as a friendly greeting to a stranger," he explains. "I believe that making the world a better place for all peoples calls for an investment of personal kindness." As the song suggests: I'm gonna start a revolution; I'm gonna take it to the street, I'm gonna smile at every solitary person that I meet! I'm gonna wave at total strangers no matter where they're from. I'm gonna start a revolution. gonna win it one by one. Check it out here: https://www.revolution1x1.org/ The designated charity for "Revolution (1x1)" is Sojourners, the faith-based organization that promotes the integration of spiritual renewal and social justice. Stookey's powerful rendition of "America the Beautiful," complete with two original verses he wrote, is paired with People for The American Way, the progressive advocacy organization founded by television producer Norman Lear to encourage civic participation and defend fundamental rights. He has also paired the song "Not That Kind of Music" with the non-profit initiative Music to Life, which he founded in 2001 with his daughter Liz Stookey Sunde to fund the work of other socially responsible artists through technology, entertainment, artist collaboration and education. The organization recently released its own compilation CD of 15 artists whose work they support called Hope Rises. Stookey grew up in the Midwest, where he played electric guitar in his high school rock 'n' roll band, and he moved to New York City at the age of 20 in search of independence. What he found was a burgeoning folk music scene and the "Peter" and "Mary" who would become his partners in the adventure of a lifetime. Via signature vocal harmonies and socially conscious songs like "If I Had a Hammer," the anti-war "Where Have All the Flowers Gone" and "Blowin' in the Wind," which gave early national exposure to then fledgling songwriter Bob Dylan, Peter, Paul & Mary's music penetrated every corner of the country. Their first album reached the top of the charts and stayed there for two years. They sang at the White House as well as intimate coffeehouses and large stadiums. When Martin Luther King Jr. delivered his "I Have a Dream" speech at the 1963 March on Washington, it was Peter, Paul and Mary who sang. In 1970, after years of playing 200-plus shows annually, the group took a much-needed sabbatical, providing Noel and his family a chance to relocate to the idyllic coast of Maine. While the group reunited a decade later, Noel used the hiatus and the reduced touring schedule to hone his solo canon, beginning with the release of his PAUL AND album, the first of some 20 solo album projects. His "Wedding Song (There Is Love)" from PAUL AND was a major chart hit and became a staple for-what else-weddings. JUST CAUSES is Stookey's latest album, his first since 2018, and perhaps the most concise attempt to curate music that speaks to making the world a better place. His focus as a songwriter has been to further his role as an activist and create music of conscience and concern. JUST CAUSES serves as a succinct showcase for his convictions. In addition to creating music projects of his own, Stookey oversees Neworld Multimedia, presenting new artists and creating children's TV shows and music. The royalties from "Wedding Song" go to the Public Domain Foundation, where nearly $2 million has already been put to work for charitable causes. He hopes that JUST CAUSES will continue in this tradition.

The Lucky Few
77. Back to School or Back to the Screen? (Covid-19 & the Upcoming School Year ft. Dr. Spinazzi)

The Lucky Few

Play Episode Listen Later Jul 21, 2020 54:29


Anyone else feeling more uncertain about the upcoming school year than ever before? We know we are! That's why we have Dr. Spinazzi back on the show for a special episode about her insights into Covid-19 and her thoughts on sending kids to school in the middle of this pandemic. Not only is she a physician and professor, Dr. Spinazzi is the medical director of Charlie's Clinic, a Down Syndrome specific clinic in Oakland, CA. We are so grateful for her infinite wisdom and her heart for our kiddos. Join us for a chat about classroom safety, school precautions, the risks and benefits of distance learning, + so much more. And whatever the school year looks like for you and your family, we are cheering you on. __ Learn more about Charlie's Clinic, where Dr. Spinazzi works and follow them on Instagram @oaklanddownsyndromeclinic Check out UCSF's Youtube channel for weekly Covid-19 updates Read a Q & A on Covid-19 and Down Syndrome by Down Syndrome Medical Interest Group, Global Down Syndrome Foundation, National Down Syndrome Congress, National Down Syndrome Society, National Task Group on Intellectual Disabilities, and Down Syndrome Foundation LET'S CHAT Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes. HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! --- Send in a voice message: https://anchor.fm/theluckyfewpod/message Support this podcast: https://anchor.fm/theluckyfewpod/support

Down Syndrome Center of Western Pennsylvania Podcast
#74 - Race and Healthcare for People with Down Syndrome (with Shauntel Neal-Howe and Valerie Williams)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Jun 13, 2020 27:40


Shauntel Neal-Howe (Vice President, National Down Syndrome Congress) and Valerie Williams (Secretary, National Down Syndrome Congress) joined Dr. Vellody on the podcast to discuss their experiences with race and healthcare, including their experiences as parents of children with Down syndrome.

race healthcare down syndrome howe valerie williams national down syndrome congress
Down Syndrome Center of Western Pennsylvania Podcast
#71 - Right to Equal Medical Treatment for People with DS (with Heather Sachs, JD)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Apr 21, 2020 23:26


Dr. Vellody was joined on the podcast today by Heather Sachs, JD, the Policy and Advocacy Director of the National Down Syndrome Congress.  They discussed the rights of people with Down syndrome when it comes to obtaining equal medical treatment, particularly during the COVID-19 pandemic. NDSC Policy and Advocacy  https://www.ndsccenter.org/political-advocacy/ National Down Syndrome Advocacy Coalition https://www.ndsccenter.org/political-advocacy/national-down-syndrome-advocacy-coalition/ National Down Syndrome Advocacy Coalition Webinar on COVID https://register.gotowebinar.com/recording/27821348694419971 NDSC COVID-19 Resources https://www.ndsccenter.org/programs-resources/covid-19-resources/  

The Lucky Few
63. Health & Down Syndrome w/Dr. Noemi Spinazzi

The Lucky Few

Play Episode Listen Later Mar 31, 2020 66:01


“Stay home, wash your hands, don't touch your face….” you've heard it all before. But now you can hear from pediatrician Dr. Noemi Spinazzi, who specializes in Down Syndrome! She works at a children's hospital in Oakland, CA and is the medical director of Charlie's Clinic - a Down Syndrome specific health care center! Today we're asking her about all things health and Down Syndrome from special Covid-19 precautions, medical myths, speech, pneumonia, hearing, and more! Dr. Spinazzi also shares what it's like to be a doctor in our Covid-19 world and how we can all support medical professionals, hint: stay home! (if possible). Speaking of whom, thank you so much to all of you out there who are working hard to keep everyone safe, including our extra at-risk kiddos with Down Syndrome. We see you and appreciate you so much! Alright friends, grab your pens and paper (you'll want to take notes on this one) and enjoy! ___ SHOW NOTES Learn more about Charlie's Clinic, where Dr. Spinazzi works and follow them on Instagram @oaklanddownsyndromeclinic Read Q & A on Covid-19 and Down Syndrome by Down Syndrome Medical Interest Group, Global Down Syndrome Foundation, National Down Syndrome Congress, National Down Syndrome Society, National Task Group on Intellectual Disabilities, and Down Syndrome Foundation Check out the other Covid-19 resources that we mentioned: Protecting Your Family From Covid-19 by Dr. David Price Dr. Fauci Answers Trevor's Questions About Coronavirus LET'S CHAT Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes. HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! CHECK OUT HEATHER'S NEW BOOK Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs by Heather Avis is NOW available on Amazon. Head to Youtube and subscribe to The Lucky Few's NEW Channel: In Search of The Lucky Few. Click here to start watching now! --- Send in a voice message: https://anchor.fm/theluckyfewpod/message Support this podcast: https://anchor.fm/theluckyfewpod/support

Down Syndrome Center of Western Pennsylvania Podcast
#65 - Speech Apraxia (with Betsy Gilbert, CCC-SLP)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Feb 4, 2020 21:53


Betsy Gilbert of Therapy Works LLC joined Dr. Vellody on the podcast to discuss speech issues in Down syndrome, particularly speech apraxia.   To get more information on speech apraxia and Down syndrome from Libby Kumin and the National Down Syndrome Congress:  https://www.ndsccenter.org/wp-content/uploads/Apraxia.pdf To get more information on speech apraxia:  https://www.apraxia-kids.org/new-to-apraxia/   To get more information about Therapy Works or to schedule an appointment: https://therapyworksllc.com

speech ccc slp apraxia national down syndrome congress
bUnekeRadio
Ashley DeRamus Designer with Downs Syndrome on bUneke UnScripted

bUnekeRadio

Play Episode Listen Later Nov 8, 2019 61:00


Ashley DeRamus, the founder of Ashley by Design and the Ashley DeRamus Foundation helps women of all ages, body types and abilities feel beautiful and fulfill their dreams. Ashley is the first fashion designer with Down Syndrome at Orlando Fashion Week and lives by the motto: Don't tell me what I can't do. Let me show you what I can do. What makes Ashley DeRamus Uneke (unique)? Ashley is a graduate of The Rise School at University of Alabama in Tuscaloosa, AL. In 2012, Ashley co-founded the Ashley DeRamus Foundation. In July 2019, Ashley will be the first person with special needs to have sung the National Anthem or do the Pledge of Allegiance in all 50 states.She is the first person with Down Syndrome who has five-days certified as a Tall Ship Sailor by The U.S. Coast Guard. In 2013, Ashley by Design fashion line caught attention around the world.Created her first music video, Love is Stronger, with Grammy Award-winning Christian and gospel.Has been  interviewed at the United Nations Speakers Corner about living with Down syndrome.She was a featured presenter at the 2014 Alabama Transition Conference in Auburn, AL.Ashley funded four scholarships for The Bell Center's programs.Ashley has won 45 Special Olympics medals for swimming.She was named the 2015 National Down Syndrome Society Champion of Change.In Chani India, Ashley was named the 2015 Down Syndrome International Advocate of the Year.In 2016, she received the Christian Prichel Advocate of the Year award from National Down Syndrome Congress.  Learn more! buneke.org

The Lucky Few
46. Behind the Scenes with Incredible Narrative Shifters

The Lucky Few

Play Episode Listen Later Oct 21, 2019 38:50


Wondering how to turn your passions into narrative-shifting movements? (So are we!) That's why we sat down and chatted with some incredible advocates at the Down Syndrome Diagnosis Network's Rockin' Moms Retreat last month! What a joy it was to interview Kristie Magnuson (mother to @gabe.the.babe.and.co), Tamara Pursley of the National Down Syndrome Congress, and Sinead Quinn of Grateful Wellness Co.! We're talking about everything from t-shirt design to educator conferences and even mental health for moms of children with special needs. Getting to know this community of rockin' mamas is such a gift! And we'd love to get to know all of you even more next month at our live recording event! Join us for a night of conversation on how the entertainment industry is shifting the Down syndrome narrative with special guests Jamie Brewer, Jared Kozak, Gail Williamson who represents ABC's Cole Sibus, and many more! Get your tickets here. --- SHOW LINKS Keep up with Gabe the Babe and Co. Instagram Facebook Website Find resources and more from the National Down Syndrome Congress Instagram Facebook Website Check out Grateful Wellness Co. Instagram Facebook Website LIVE EVENT: Join us on the evening of Thursday, November 21st for a LIVE podcast recording event! We're chatting with actors/actresses who have Down Syndrome, as well as their talent representative, Gail Williamson all about DS representation in the media! Get your tickets here. LET'S CHAT Email hello@theluckyfewpodcast.com with your questions and Good News for future episodes. HELP US SHIFT THE NARRATIVE Interested in partnering with The Lucky Few Podcast as a sponsor? Email hello@theluckyfewpodcast.com for more information! CHECK OUT HEATHER'S NEW BOOK Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs by Heather Avis is NOW available on Amazon. Head to Youtube and subscribe to The Lucky Few's NEW Channel: In Search of The Lucky Few. Click here to start watching now! --- Send in a voice message: https://anchor.fm/theluckyfewpod/message Support this podcast: https://anchor.fm/theluckyfewpod/support

Down Syndrome Center of Western Pennsylvania Podcast
#57 - National Down Syndrome Convention (with David Tolleson and Coleen Popp)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Feb 26, 2019 22:55


Dr. Vellody is joined today by the Executive Director of the National Down Syndrome Congress, David Tolleson, and the Convention Coordinator and Strategic Initiatives Director, Coleen Popp.  They are discussing the National Down Syndrome Congress (http://www.ndsccenter.org) and the upcoming convention in Pittsburgh from June 27-30, 2019 (https://www.ndsccenter.org/annual-convention/).  

Down Syndrome Center of Western Pennsylvania Podcast
#37 - Have a Question - Ask the Doctor!

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Mar 15, 2017 79:09


Dr. Vellody and Sheila Cannon participated in an informal question and answer session with family members at the National Down Syndrome Congress convention in 2016.  

national down syndrome congress
Down Syndrome Center of Western Pennsylvania Podcast
#36 - 2016 NDSC Convention - Medical Issues in Down Syndrome (Part 2)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Dec 15, 2016 47:12


Dr. Vellody spoke at the 2016 National Down Syndrome Congress convention on Medical Issues in Down Syndrome. This is Part 2 of the lecture, including the slides used during the presentation.

convention down syndrome medical issues national down syndrome congress
Down Syndrome Center of Western Pennsylvania Podcast
#35 - 2016 NDSC Convention - Medical Issues in Down Syndrome (Part 1)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Nov 3, 2016 43:01


Dr. Vellody spoke at the 2016 National Down Syndrome Congress convention on Medical Issues in Down Syndrome.  This is Part 1 of the lecture, including the slides used during the presentation.

Down Syndrome Center of Western Pennsylvania Podcast
#30 - NDSC Convention, Medical Issues in Down Syndrome

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Oct 9, 2014 115:58


Dr. Vellody spoke to parents and families at the 2014 National Down Syndrome Congress convention in Indianapolis.  This recording includes a video component with the slides from the lecture.

Down Syndrome Center of Western Pennsylvania Podcast
#25 - Happy World Down Syndrome Day!

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Mar 20, 2014 2:05


Today is World Down Syndrome Day.  Please enjoy this video courtesy of the National Down Syndrome Congress.  This video contains the resolution that the adults with Down syndrome wrote at the last national meeting.

world down syndrome day national down syndrome congress
Epilepsy Talk Radio
Down Syndrome and Epilepsy

Epilepsy Talk Radio

Play Episode Listen Later Nov 14, 2013 18:00


In this episode of Epilepsy.coms Hallway Conversations, Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com/Professionals, interviews David Tolleson, Executive Director of the National Down Syndrome Congress, about Down syndrome and epilepsy.

Down Syndrome Center of Western Pennsylvania Podcast
#14 - Medical Issues in Ds, Part 2 (Cardiac, Gastro)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Jul 26, 2013 11:21


Dr. Vellody spoke at the National Down Syndrome Congress meeting in Denver, Colorado in July 2013.  This is the second of six parts, discussing Cardiac and Gastrointestinal issues in Down syndrome.

Down Syndrome Center of Western Pennsylvania Podcast
#15 - Medical Issues in Ds, Part 3 (ENT, Ophtho, Endocrine, Hematologic, Musculoskeletal)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Jul 26, 2013 15:52


Dr. Vellody spoke at the National Down Syndrome Congress meeting in Denver, Colorado in July 2013.  This is the third of six parts, discussing ENT, Ophthalmologic, Endocrine, Hematologic, and Musculoskeletal issues in Down syndrome.

Down Syndrome Center of Western Pennsylvania Podcast
#16 - Medical Issues in Ds, Part 4 (Atlantoaxial instability, Neurologic, Dental, General Pediatric)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Jul 26, 2013 12:07


Dr. Vellody spoke at the National Down Syndrome Congress meeting in Denver, Colorado in July 2013.  This is the fourth of six parts, discussing Atlantoaxial instability, Neurologic, Dental, and General Pediatric issues in Down syndrome.

Down Syndrome Center of Western Pennsylvania Podcast
#17 - Medical Issues in Ds, Part 5 (Dietary, Behavioral, DS Center)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Jul 26, 2013 12:31


Dr. Vellody spoke at the National Down Syndrome Congress meeting in Denver, Colorado in July 2013.  This is the fifth of six parts, discussing Dietary and Behavioral issues in Down syndrome and the role of a comprehensive Down Syndrome Center.

colorado behavioral dietary medical issues national down syndrome congress
Down Syndrome Center of Western Pennsylvania Podcast
#13 - Medical Issues in Ds, Part 1 (Background, Genetics, Developmental)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Jul 26, 2013 15:41


Dr. Vellody spoke at the National Down Syndrome Congress meeting in Denver, Colorado in July 2013.  This is the first of six parts, discussing background, genetics, and developmental issues in Down syndrome.

colorado genetics developmental medical issues national down syndrome congress
Down Syndrome Center of Western Pennsylvania Podcast
#18 - Medical Issues in Ds, Part 6 (Q&A)

Down Syndrome Center of Western Pennsylvania Podcast

Play Episode Listen Later Jul 26, 2013 15:07


Dr. Vellody spoke at the National Down Syndrome Congress meeting in Denver, Colorado in July 2013.  This is the final of six parts, an informal question and answer session that followed the talk.

colorado medical issues national down syndrome congress