Down Syndrome Center Podcast

Child life specialists are specially trained to prepare children and family members for medical experiences and teach techniques to help reduce stress and anxiety.  Stephanie Colaberardino, MS, CCLS, CIMI joined the podcast today to talk about how a Child Life Team can be helpful for patients with Down syndrome. Children's Hospital of Pittsburgh Child Life  https://www.chp.edu/our-services/child-life/specialist-assistant Children's Hospital of Pittsburgh Adaptive Care Team https://www.chp.edu/for-parents/support-services/family-support-services   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.

Author Debbie Miller joined the podcast today to discuss her life experiences with her sibling Rick.  Debbie has written a memoir called Raising Ricky which can be found at: https://a.co/d/4ILqLyD (book and audiobook)   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.

Dr. Sarah Mann joined the podcast today to discuss foot issues in Down syndrome and the role for supportive shoes and orthotics.   For more information on the Mann Method Therapy Network: https://www.mannmethodpt.com 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.

In honor of the 200th episode of the podcast, three very special guests joined the podcast today to share their memories and the impact that their Uncle Das has had on their lives.

Dr. Robyn Filipink, part of our Down Syndrome Center team, joined the podcast to talk about the latest information on Down Syndrome Regression Disorder.     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.

Happy World Down Syndrome Day!  Hug that special someone with Down syndrome who you love today!   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.

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.

Advocating for your loved one with Down syndrome can sometimes feel overwhelming.  Where do you start?  How do you do it effectively?  Mitch Rothholz and Julie Gerhart-Rothholz joined the podcast today to share their experiences in advocacy, including experiencing their son Evan as he has become a powerful self-advocate himself. FIND YOUR LEGISLATORCongress:  https://www.congress.gov/members/find-your-member HELPFUL NATIONAL ORGANIZATIONSNDSC:  https://www.ndsccenter.org/political-advocacy/take-action-stay-informed/ NDSC NDAC:  https://www.ndsccenter.org/political-advocacy/national-down-syndrome-advocacy-coalition/ndac-faq/ NDSS:           https://ndss.org/                        https://ndss.org/ndss-advocacy-alerts Global DS Foundation:  https://www.globaldownsyndrome.org/global-advocacy-elongating-life-improving-health/ The ARC:  https://p2a.co/lRPDZ5C   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.

Cherese Sandrock (Executive Director) and Greg Coni (Board President) of the Down Syndrome Association of Pittsburgh joined the podcast today to let us know about what's coming up for our local Pittsburgh community in 2025! Down Syndrome Association of Pittsburgh (DSAP)https://dsapgh.org https://facebook.com/dsapgh E-mail: ​info@dsapgh.org Phone: 412-997-2297   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 the site hosting for this podcast.

Dr. Susan Fawcett, PhD, RSLP is the Director or Therapy, Behaviour, and Family Support at the Down Syndrome Resource Foundation (https://www.dsrf.org/about-us/our-staff/susan-fawcett/).  Dr. Fawcett joined the podcast to discuss mental health and therapy approaches in people with Down syndrome. For more information: Down Syndrome Resource Foundation https://www.dsrf.org Adult DS Center https://adscresources.advocatehealth.com/resources/?category=Mental%20Health Mental Wellness in Adults with Down Syndrome (book)  https://adscresources.advocatehealth.com/mental-wellness-in-adults-with-down-syndrome-2nd-edition/ Down Syndrome Connection of the Bay Resources https://padlet.com/DSCBA/mental-health-professional-s-tools-supports-ottzudfzmka3q8n7 Social Thinking  https://www.socialthinking.com/search?searchTerm=gremlin