Kelli Caughman and Crystal Lotterberry, founders of the Black Down Syndrome Association joined the podcast today to share their stories and how they led to the creation of this fantastic organization.  For more information, go to https://www.blackdownsyndrome.org/. Co Founders [email protected]  [email protected]  General : [email protected] Website: ...

Dr. Brian Chicoine and Dr. Hannah Graham from the Adult Down Syndrome Center with Advocate Health Care in Park Ridge, Illinois joined the podcast today to discuss a listener question on menopause in Down syndrome.  While I had these experts on the podcast, we also discussed other aging related topics in Down syndrome. For more information on the Adult Down Syndrome Center, go to: https://www.advocatehealth.com/health-services/adult-down-syndrome-center/. To access the Down Syndrome...

LaTaasha Byrd joined the podcast today to answer listener questions about homeschooling.  Is homeschooling a legitimate option for children with Down syndrome.  If so, what are some important considerations that may be unique in this population? Countdown to K https://countdowntok.com Countdown Academy https://countdown-academy.teachable.com Inclusion is for the Included Book https://countdowntokstore.company.site    

Gary Cimaglia, Special Olympics North America’s Vice President of Sports, joined the podcast today to give a broad overview of the Special Olympics and how you and your loved ones can be involved.  For more information, go to https://www.specialolympics.org.   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to [email protected]. If you would like to partner with the Down Syndrome Center, including this podcast, please...

Down Syndrome Regression Disorder (formerly called Unexplained Regression in Down Syndrome or Down Syndrome Disintegrative Disorder) is a diagnosis that has previously been missed or misdiagnosed in people with Down syndrome.  It is a topic in high interest amongst researchers in the field, including today's podcast guest Dr. Jon Santoro from Children's Hospital of Los Angeles.  Dr. Santoro gave us a review of the topic as well as current research into the diagnosis and treatment of this...

Dr. Katie Frank from the Adult Down Syndrome Center in Park Ridge, IL joined the podcast to answer listener questions regarding sound sensitivity, toothbrushing, haircuts, and nail trims.  So many people with Down syndrome have sensory difficulties with these tasks and Dr. Frank helped explain her approach to these situations. For fantastic caregiver resources on these types of topics, go to: https://adscresources.advocatehealth.com/ Some examples of equipment discussed on the podcast: 3...

The official pandemic status may be gone, but COVID still lingers.  Listen as Dr. Andy Nowalk shares with us the latest updates on COVID, including the upcoming COVID vaccine boosters.

How do we help people with Down syndrome during times of grief and grieving?  Dr. Rose Reif, LCMHC, CRC, BC-TMH and owner of Reif Counseling Services, PLLC joined the podcast today to discuss her perspective. For more information on Dr. Reif, go to https://rosereif.com/about/. For more information on this topic, check out Dr. Reif's book https://www.amazon.com/Helping-Child-syndrome-Understand-Death/dp/B0BXN5TFCC/. Dr. Reif's recommended this resource by Fred Rogers as well ...

Dr. Stacy Taylor, with Advance Behavior and Analysis, is an expert in behavioral analysis and special interest in patients with Down syndrome, joined the podcast to discuss her approach to behavioral questions that we received from you!  We discussed inappropriate word usage, dumping behaviors, and scripting among other topics.   For more information on Dr. Taylor's practice, including potentially scheduling a visit with the practice, visit http://advancebehavior.com/.   To find a...

As part of our Meet the Nationals series, Sarah Mulligan, Executive Director of Down Syndrome Affiliates in Action joined the podcast to talk about the great work that this organization does with local affiliates all over the country.  For more information on DSAIA, see https://www.dsaia.org.   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to [email protected]. If you would like to partner with the Down Syndrome Center, including this...

Ben Wright, co-creator of Bitty and Beau's Coffee along with his wife Amy Wright, joined the podcast today to discuss the motivation behind these amazing coffee shops!  There will be a Bitty and Beau's Coffee Shop opening in Pittsburgh soon so we asked Ben to join us to give us some background on why he is so passionate about these shops (and it's not just the coffee!). If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to [email protected]. ...

Dr. Lina Patel from the Sie Center in Denver joined the podcast again today.  Given that facial sensitivites are very common in people with Down syndrome, tolerance to wearing hearing aids, glasses, CPAP masks, etc. can be a challenge.  Dr. Patel addressed a listener question on this topic on today's podcast. If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to [email protected]. If you would like to partner with the Down Syndrome Center,...

Unhealthy eating patterns are unfortunately common in people with Down syndrome.  On this podcast, dietician Shannon Frizzell joins to discuss a listener question on some engrained eating patterns in their loved one with Down syndrome.   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to [email protected]. If you would like to partner with the Down Syndrome Center, including this podcast, please...

In honor of World Down Syndrome Day, enjoy this roundtable coversation recorded between my brother and his friends!

Dr. Santamaria rejoins the podcast to address a listener question on throwing behavior.  What's the best approach when your child with Down syndrome has a tendency to throw objects?  And how do you keep everyone else safe? :)  Join us for a conversation on this specific topic as well as  general thoughts on behavior management.  And keep those listener questions coming! If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to [email protected]. ...

Dr. Jordan Jones is an Associate Professor of Pediatrics and Pediatric Rheumatologist from Children's Mercy Hospital in Kansas CIty, MO.  Dr. Jones has a special interest in working with children with Down syndrome and has published numerous articles on this topic.  He joined the podcast today to discuss a listener-requested topic on juvenile idiopathic arthritis in Down syndrome.  For more information on Dr. Jones, please visit https://www.childrensmercy.org/profiles/jordan-t-jones/.   If...

Carissa Carroll, Founder and Executive Director of Jack's Basket, joined the podcast today to talk about her story and how it influenced her to create Jack's Basket.  This organization serves families all over the world, offering a welcome and congratulations to new families wherever they may be.  You can find more information about Jack's Basket at https://www.jacksbasket.org/.   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail...

Award winning Director, Olivier Bernier joined the podcast today to talk about his recently released documentary called Forget Me Not.  Part American, part Quebecois, Olivier is also the Co-Founder and Creative Director of the production company, Rota6 Films, specializing in documentary and commercial films. As 3-year-old Emilio prepares to start school, his family finds itself embroiled in a challenge all too common for children with disabilities – to secure the right to an inclusive...

Dr. Kelly Austin, Director of the Colorectal Center for Children at Children's Hospital of Pittsburgh, joined the podcast to discuss Hirschsprung disease.  Seen more commonly in people with Down syndrome, listen to learn more about this important condition. Colorectal Center of Children  https://www.chp.edu/our-services/surgery-pediatric/pediatric-surgery-services-we-offer/colorectal-center-for-children If there is a topic that you would like us to cover on the podcast, please e-mail me...

Scott Quaife, NSCA-CPT, Health and Wellness Coordinator with Down Syndrome Innovations in Kansas, joined the podcast to discuss the importance of exercise in Down syndrome and overcoming potential obstacles to reaching exercise goals. For more in-depth information on this topic, please visit: https://vimeo.com/753072214 Down syndrome innovations https://kcdsi.org If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to [email protected]. If...

Michelle Sie Whitten from the Global Down Syndrome Foundation joined the podcast today as part of our "Meet the Nationals" series.   For more information on Global Down Syndrome Foundation https://www.globaldownsyndrome.org Prenatal & Newborn Pamphlet: https://www.globaldownsyndrome.org/prenatal-testing-pamphlet/ GLOBAL Adult Healthcare Guideline: https://www.globaldownsyndrome.org/medical-care-guidelines-for-adults/ If you have a podcast topic you would like us to address, please...

Dr. Anna Esbensen, psychologist with the Thomas Center for Down Syndrome at Cincinnati Children's Hospital, joined the podcast to answer a listener question about psychological issues that are seen in Down syndrome.   Thomas Center for Down Syndrome https://www.cincinnatichildrens.org/service/t/down-syndrome/services Association of University Centers on Disabilities https://www.aucd.org/directory/directory.cfm?program=UCEDD The National Association for the Dually Diagnosed (NADD) ...

To celebrate Down Syndrome Awareness Month, representatives from the Down Syndrome Association of Pittsburgh (DSAP) joined the podcast today to reflect on their experiences as parents as well as highlight the ongoing work of DSAP.  The highlight event of the year is the Buddy Walk which is coming up on October 23, 2022 at Schenley Plaza on the University of Pittsburgh campus.   Helpful websites related to the podcast discussion today: DSAP: https://www.dsapgh.org/ or call/text us...

Kandi Pickard, President and CEO of the National Down Syndrome Society, joined the podcast as part of our series on the national organizations who serve people with Down syndrome.  You can find more information about NDSS here (https://www.ndss.org).   If you have a podcast topic you would like us to address, please email [email protected]. If you would like to partner with us in the work of the Down Syndrome Center, including this podcast, please visit...

Dr. Nowalk joined the podcast again to give us a general COVID update and discuss specifically the new Omicron boosters. CDC Statement on Omicron Boosters https://www.cdc.gov/media/releases/2022/s0901-covid-19-booster.html If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to [email protected]. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. ...