Genetic disorder, "trisomy 21"
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Country singer and songwriter John Paul Von Arx joins Oscar for a heartfelt and uplifting conversation about what it truly means to see the image of God in every person. We talk about human dignity, authentic respect, and how to move beyond superficial inclusion when engaging with people who have Down syndrome or other disabilities. From lessons learned in MMA fights to everyday encounters that challenge our perceptions, this episode invites you to see others—especially those the world overlooks—with new eyes and a fuller heart. We would love it if you could leave a written review on Apple and share with your friends! Editing provided by Forte Catholic (https://www.fortecatholic.com/)
Life brings Luke Wolf, a war veteran, back to his hometown, where his sister is, who has Down Syndrome. Things are different, or maybe it's just that now he's different. After years of running from his problems, Luke must face his monsters. MONSTERS WITHIN was written, directed, produced, and stars Devin Montgomery (Worm). The film was executive produced by Curtis Gardner and also stars Kendall Cavener (The Last Rodeo), Skeeta Jenkins (Puppet Master: The Littlest Reich, Jakob's Wife, Satanic Panic), Daniella Montgomery, Brandon Stewart (Sovereign) who was also the DP, and Samuel French (Killers of the Flower Moon, Fear The Walking Dead) in his final starring role before his tragic death. French has won several Best Supporting Actor awards for his intense performance in MONSTERS WITHIN, and the film is dedicated to him. The character of "Elle," who is the main character's sister and the heart and soul of the movie, is played by Devin Montgomery's actual sister, Daniella Montgomery. She has performed at several events for the Down Syndrome Associations and Special Needs choir in Oklahoma. The story of the bond between a brother and sister, with one having special needs, being portrayed as authentically and real as possible, was very important to both Devin and Daniella Montgomery. This award-winning film has screened at numerous film festivals including WorldFest-Houston International Film Festival - WON BRONZE for BEST FIRST FEATURE FILM, Edinburgh Independent Film Festival - WON BEST LEAD ACTOR (Devin Montgomery), Stockholm City International Film Festival - WON BEST ACTOR (Devin Montgomery), Cowpokes International Film Festival - WON BEST SUPPORTING ACTOR (Samuel French), Bare Bones International Film Festival - WON AUDIENCE CHOICE FOR BEST FEATURE FILM and BEST ACTOR (Devin Montgomery), Red Dirt International Film Festival - WON BEST FEATURE FILM, Indie Vegas Film Festival - WON BEST HORROR/THRILLER FEATURE FILM, Massachusetts Independent Film Festival - awarded an OUTSTANDING ACHIEVEMENT FOR FIRST FEATURE FILM, among many other festivals. MONSTERS WITHIN has a running time of 100 minutes and will not be rated by the MPAA. Buffalo 8 will release the film on digital platforms on October 3, 2025. The film will premiere on Cineverse's Screambox on November 7 in time for Veterans' Day. To view the trailer, go to: https://www.youtube.com/watch?v=ZWHJj4P6N7E For more information, go to: https://www.monsterswithinmovie.com/ Social Media Handles: https://www.instagram.com/monsterswithinmovie/ Tik Tok: https://www.com/@monsterswithinmovie/ YT: Watch the Full Interview on https://youtu.be/Dxq7S2Ck7Uw Stay conneted with me: https://www.chonacas.com/links/
Laura Mattie and Alex Barkhimer from the school of Speech and Hearing Science at the University of Illinois joined the podcast to talk about the exciting Speech Accessibility Project to help Big Tech companies create devices that can understand people with speech differences. To find more about the project, go to https://speechaccessibilityproject.beckman.illinois.edu. 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.
Join me for some very special guests, TEAM IRON WILL, who celebrate the perseverance of children with Down syndrome and their families. We will be discussing the intrinsic value of people with Down Syndrome and why we need to advocate for them.Go HERE to learn more and support families and children with Down Syndrome:https://www.teamironwill.org/TRIVITA:Use my TRIVITA link to get started on your wellness journey: https://bit.ly/restored-healthORCALL: 800-991-7116 and use gift card number: RSCBSQRJ PIN: 5398 Covenant Eyes: If you want to protect yourself and your loved ones from the dangers of p*rn, get Covenant Eyes: https://bit.ly/Restore-CovenantUSE CODE RESTORE30 at checkout to get your first 30 days FREE when you use the link ✅Other ways for you to support the ministry:
On Season 11, Episode 6 of The LowDOWN: A Down Syndrome Podcast, Jeni Carcamo and Ana Lazcano give us the lowdown on supporting Latin Down syndrome families.Support the showThe LowDOWN: A Down Syndrome Podcast is produced by the Down Syndrome Resource Foundation. Learn more and support the podcast at DSRF.org.Follow @DSRFCanada on Facebook, Instagram, and Twitter.Leave us a rating and review on Apple Podcasts.
We've got some multi-tasking, multiple-hat-wearing filmmakers on this week's BEHIND THE LENS as we're looking at two indie gems with two wonderful filmmakers – LISA BRENNER, who is discussing her feature narrative screenwriting debut, ONE BIG HAPPY FAMILY, which she also produces and in which she stars alongside Linda Lavin in her final big screen performance; and DEVIN MONTGOMERY, who makes his feature directorial debut with the drama MONSTERS WITHIN. And like Lisa, he also stars in his film, as well as serving as writer and editor. ONE BIG HAPPY FAMILY, which is based on Lisa's own life, explores themes of family, identity, and unity, all done with heart and laughter. On her 40th birthday, Rachel is grappling with a looming midlife crisis and the nerve-wracking task of delivering a speech at her daughter's Bat Mitzvah. But when a DNA test unexpectedly reveals that she's only half-Jewish and her beloved father isn't her biological parent, Rachel's life is thrown into disarray, and suddenly, she's embarking on a hilarious journey with her eccentric mother Lenore to find out who she really is. And as if you hadn't already guessed, Linda Lavin plays eccentric mother Lenore to Lisa's Rachel. Then we go a bit darker with DEVIN MONTGOMERY and MONSTERS WITHIN, the story of Luke Wolf, a war veteran, who returns to his hometown, where his sister Elle is, who has Down Syndrome. Things are different, or maybe it's just that now he's different. After years of running from his problems, Luke must face his monsters. Written, directed, produced, edited, and starring Devin as Luke Wolf, MONSTERS WITHIN also stars Samuel French, Skeeta Jenkins, Daniella Montgomery, Kendall Cavener, and Katy Hayes. http://eliasentertainmentnetwork.com
Send us a textCasey and her son, Cannon, talk about how fun being a big brother to someone with Down Syndrome is!Support the show
Twin and special needs mom Missy Haughery shares her journey of raising twins—one with Down syndrome—and the lessons she wishes she'd known from the start. She is as candid about the struggles, in parenthood and marriage, as she is about the lessons and the joy. It all helped shape the family she loves. If you've ever gotten a diagnosis that feels overwhelming, you'll be empowered by Missy's story of encouragement, perspective, and practical advice for parents navigating a similar path.
On Season 11, Episode 5 of The LowDOWN: A Down Syndrome Podcast, Kailey and Sam DeLucry give us the lowdown on friendship and psychological well-being for children with Down syndrome.Support the showThe LowDOWN: A Down Syndrome Podcast is produced by the Down Syndrome Resource Foundation. Learn more and support the podcast at DSRF.org.Follow @DSRFCanada on Facebook, Instagram, and Twitter.Leave us a rating and review on Apple Podcasts.
Down syndrome, also known as Trisomy 21, is a common genetic condition affecting roughly 1 in 700 live births in the United States. A recent study that came out in February 2025 that studied skin cells from an individual with Down syndrome to determine if it was possible to genetically engineer the extra chromosome out of the DNA. This study's aim was to see if it was possible to use CRISPR-CAS9 (a technology used to modify genetic code and expression), to be able to completely knock out a chromosome. The reason these researchers used the DNA from an individual with Down syndrome was because the third chromosome is a clear marker that they can see easily to determine if they were successful or not. However, one Press Release article covering this research wrote a piece that incorrectly frames the study as a possible way to "cure" Down syndrome, which is not at all what the researchers were attempting to do. This week, Dr. Jonathan Karp and student producer Kaya Basatemur go through the details of this study, what the scientists' goals were, and why the Press Release article did not accurately describe anything that the researchers did. Tune in to find out more about this interesting study, possible future research, and practical uses of CRISPR-CAS9 genome editing technology!
Meredith Peterson joined the podcast to talk about the Parent Education & Advocacy Leadership (PEAL) Center. Since 2005, the PEAL Center has been committed to serving families and professionals across Pennsylvania. Today PEAL works with families, youth and young adults with disabilities and special health care needs to help them understand their rights and advocate for themselves. Through our unwavering commitment to inclusion and our guiding values, we empower families and individuals to be included in their home schools and access high quality, coordinated physical and behavioral health care. PEAL's services are provided at no charge to families as they are funded by private donations and federal, state, and private grants. For more information: PEAL Center: https://www.pealcenter.org/ CIPIR (Center for Parent Information and Resources) https://www.parentcenterhub.org/ - where to find your state's PTI Upcoming Wrights Law Training on 9/18/25: https://www.tfaforms.com/5171156?tfa_2400=PEAL 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.
Steve Chatman is Vice President of Rising Above Ministries and host of the Rising Above Dads Podcast. Steve and his wife Lori have five children and four grandchildren. Steve is a special-needs dad as two of his children are living with Down Syndrome. Steve spent 30 years in church ministry before joining Rising Above Ministries in 2022. He loves encouraging and equipping families and churches. In this episode we chat about:Timeline: 00:46 Introduction and Steve's Bio.02:46 Rising Above Ministries04:00 Weekend Respite Program By the Brook & Base Camp.06:00 How do wives give permission for husbands to rest. "What special needs dads want you to know but don't tell you about"11:26 Communication between partners. How do you ask for a break or respite?15:15 Find 30 minutes a week (suggestive but by no means minimum) to connect regard scheduling and updating partners17: 00 Rising Above Dads Podcast22:00 ConclusionRelated Episode 146
In this week's episode, we'll learn more about relationships between Epstein-Barr virus genomic variants and human diseases, including hematological malignancies; the presence and timing of somatic GATA1 mutations and their relationship to a Down syndrome-specific form of leukemia; and new definitions for high-risk multiple myeloma that emphasize the presence of two or more high-risk cytogenetic abnormalities.Featured Articles:Association of Epstein-Barr virus genomic alterations with human pathologiesClinical significance of preleukemic somatic GATA1 mutations in children with Down syndromeBiallelic antigen escape is a mechanism of resistance to anti-CD38 antibodies in multiple myeloma
On Season 11, Episode 4 of The LowDOWN: A Down Syndrome Podcast, Tabish Shazad gives us the lowdown on the Karachi Down Syndrome Program.Support the showThe LowDOWN: A Down Syndrome Podcast is produced by the Down Syndrome Resource Foundation. Learn more and support the podcast at DSRF.org.Follow @DSRFCanada on Facebook, Instagram, and Twitter.Leave us a rating and review on Apple Podcasts.
Russ Ewell says, "Fortune smiled on me the day I became a father of a family with disabilities. Human limits became real as I watched my sons fight to overcome Autism and Down Syndrome. Their inspired efforts increased the intensity of purpose shared by my wife and me. We learned to live differently."Significant numbers of people fear being different. Disability has served to help my family and I overcome this fear. It has clarified what's important and freed us from convention. The struggle has consistently opened our eyes to the discovery necessary to overcome our family's human limits.This has been my personal journey. As a minister, I've applied what I've learned from my family's experience to my spiritual life and process, constantly looking for ways to grow and refusing to settle for tradition or convention. This type of transformative thinking is something I believe a relationship with God should do for everybody.Russ joins Dale on today's podcast to help us understand how to think differently in our leadership when it comes to reaching the next generations. This is a lively conversation that you will find to be very helpful.Show Notes: https://www.95network.org/learning-how-to-lead-differently-w-russ-ewell-episode-304/Support the show
Join us today for a return visit with the marvelous Ebbe as she discusses an upcoming celebration of Down Syndrome… and reveals on air for the first time a fascinating secret about her connection to Alika and Emille…
All Home Care Matters and our host, Lance A. Slatton were honored to welcome the team from the National Down Syndrome Society as guests to the show. About Margot Rhondeau: Margot Rhondeau is the Senior Director of Health & Wellness for the National Down Syndrome Society (NDSS) where she leads the creation of resources and programming to improve health and wellness within the Down syndrome community. Margot joined NDSS in 2020, bringing 14 years of experience working in the health space, both internationally and nationally, to overcome barriers to care and increase health services and programs for underserved populations. Margot is the proud mother of a child with Down syndrome. She enjoys hiking, taking her children on adventures and advocating for inclusion and acceptance. About Charlotte Woodward: All Home Care Matters and our host, Lance A. Slatton were honored to welcome the team from the National Down Syndrome Society as guests to the show. About Margot Rhondeau: Margot Rhondeau is the Senior Director of Health & Wellness for the National Down Syndrome Society (NDSS) where she leads the creation of resources and programming to improve health and wellness within the Down syndrome community. Margot joined NDSS in 2020, bringing 14 years of experience working in the health space, both internationally and nationally, to overcome barriers to care and increase health services and programs for underserved populations. Margot is the proud mother of a child with Down syndrome. She enjoys hiking, taking her children on adventures and advocating for inclusion and acceptance. About Charlotte Woodward: Charlotte Woodward is the Education Program Associate for the National Down Syndrome Society (NDSS) where she supports the development of education-related resources and educational policy initiatives. Charlotte was born with Down syndrome, as well as a heart condition, and had four open-heart surgeries when she was young. She is one of the very few people born with Down syndrome to receive a life-saving heart transplant, and she regularly shares her story to educate and advocate for others. Charlotte holds an associate degree from Northern Virginia Community College and recently graduated Suma Cum Laude from George Mason University with a bachelor's degree in sociology with a concentration in inequality and social change. About Anna Fedewa: Anna Fedewa is the Senior Manager of Government Relations for the National Down Syndrome Society (NDSS) where she leads and directs the organization's work to influence federal, state, and local policies and regulations that impact people with Down syndrome. Anna's passion for advocacy and disability rights grew from the friendships she made with individuals with Down syndrome and other disabilities as a young child and was further cultivated during her time teaching high school special education and working with her alma mater's inclusive post-secondary program. About the National Down Syndrome Society (NDSS): Founded in 1979, the National Down Syndrome Society (NDSS) empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions. NDSS engages grassroots advocates at the federal, state, and local levels and creates resources to support individuals with Down syndrome, their families, and caregivers across the lifespan on topics including education, employment, health and wellness, and aging. NDSS founded the National Buddy Walk® Program in 1995 and hosts community engagement events throughout the country including the New York City Buddy Walk® and Times Square Video, the NDSS Adult Summit, and the Down Syndrome Advocacy Conference. Visit www.ndss.org to learn more. Advocacy & Policy: NDSS advocates for federal, state, and local policies and regulations that positively impact people with Down syndrome across the country and affirm their human rights. Through grassroots advocacy, NDSS empowers community advocates to work with Congress and federal agencies, as well as state and local officials, to develop and improve policies and regulations for the benefit of the Down syndrome community. NDSS further empowers individuals with Down syndrome, their families, and other community members to influence policy at the NDSS Down Syndrome Advocacy Conference in Washington, D.C. The NDSS legislative agenda spans the life of individuals with Down syndrome from birth to adulthood including healthcare, education, employment, and economic self-sufficiency. Resources & Support: NDSS is committed to providing individuals with Down syndrome, their families, caregivers, and the public with information to support them from birth to end of life. Through events, videos, publications, and our website, NDSS provides free resources on a variety of topics including health, wellness, education, employment, adulthood and aging, financial wellness, and information for new and expectant parents. Our Adult Summit conference addresses the needs of teens and adults with practical resources and educational opportunities for individuals with Down syndrome, families, caregivers, and professionals. Community Engagement: NDSS community engagement events and activities celebrate our loved ones with Down syndrome, raise awareness among the public, and connect individuals and families within the community. Through our scholarships, grants, and awards program, NDSS supports individuals with Down syndrome in pursuing their dreams. Connect with the National Down Syndrome Society: Official Website: https://ndss.org
9.18: Louder Than Life, Jimmy Kimmel suspension, and Down Syndrome Louisville.
On Season 11, Episode 3 of The LowDOWN: A Down Syndrome Podcast, Karen Gaffney, Zack Gottsagen, Charlotte Woodward, and Melissa Hart give us the lowdown on Down Syndrome Out Loud.Support the showThe LowDOWN: A Down Syndrome Podcast is produced by the Down Syndrome Resource Foundation. Learn more and support the podcast at DSRF.org.Follow @DSRFCanada on Facebook, Instagram, and Twitter.Leave us a rating and review on Apple Podcasts.
Last year a really cool non-profit was started by Jacob Esser to help connect dads like him who are navigating parenthood with kids who have down syndrome and he shares the story behind ‘DOD's - Dads of Down Syndrome and an upcoming event on Friday and how you can visit him at Hilltop!
It's tough to keep up with all the changes going on at the Federal level or understand how that might impact people with Down syndrome in our local areas. We were joined on the podcast by two experts in policy and advocacy from the National Down Syndrome Congress (NDSC). Heather Sachs is the Policy & Advocacy Co-Director for the NDSC and Jawanda Mast is the Grassroots Advocacy Manager for the NDSC. On the podcast, we discuss how the Medicaid changes at the federal level will impact those with disabilities at the state and local level. This is Part 2 of a two part series looking at Policy and Advocacy at the Federal level. For more information: National Down Syndrome Congress (https://www.ndsccenter.org) Information and application for NDSC's National Down Syndrome Advocacy Coalition https://ndsccenter.org/policy/national-down-syndrome-advocacy-coalition-ndac/about-ndac.html Advocacy Training and Resources. Templates, one-pagers, toolkit and presentations. https://ndsccenter.org/policy/training-resources.html -Changes to Medicaid, Medicare, and Affordable Care Act: https://publichealth.jhu.edu/2025/the-changes-coming-to-the-aca-medicaid-and-medicare -Closer look at work requirements in HR1: https://www.kff.org/medicaid/a-closer-look-at-the-work-requirement-provisions-in-the-2025-federal-budget-reconciliation-law -Impact of Medicaid cuts on Home and Community Based waiver Services: https://www.healthaffairs.org/content/forefront/history-repeats-faced-medicaid-cuts-states-reduced-support-older-adults-and-disabled -Impact of Medicaid cuts on students and schools: https://healthyschoolscampaign.org/dev/wp-content/uploads/2025/03/How-Medicaid-Cuts-Will-Harm-Students-Schools.pdf 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.
On Season 11, Episode 2 of The LowDOWN: A Down Syndrome Podcast, Jessica Patay gives us the lowdown on becoming brave together.Support the showThe LowDOWN: A Down Syndrome Podcast is produced by the Down Syndrome Resource Foundation. Learn more and support the podcast at DSRF.org.Follow @DSRFCanada on Facebook, Instagram, and Twitter.Leave us a rating and review on Apple Podcasts.
Melissa Hart visits with JX associate producer Charlie Zimmermann.
On the Season 11 premiere of The LowDOWN: A Down Syndrome Podcast, Rachel Okazaki gives us the lowdown on supporting children with Down syndrome in the preschool years.Support the showThe LowDOWN: A Down Syndrome Podcast is produced by the Down Syndrome Resource Foundation. Learn more and support the podcast at DSRF.org.Follow @DSRFCanada on Facebook, Instagram, and Twitter.Leave us a rating and review on Apple Podcasts.
Having a child with Down syndrome means you're always learning about something new! And today's topic is: oral facial myofunctional therapy.. a technique used to improve the way our mouth and face muscles work! We have Irene Iskander (dental hygienist + lucky mama) on the show today to answer all of our questions:Why is mouth breathing so common amongst individuals with DS? What are the long term effects of mouth breathing?What can we do at each age to strengthen mouth and facial muscles?How is myofunctional therapy different than speech therapy or feeding therapy?We didn't realize how important this information was until we chatted with Irene! So tune in and take notes, friends!SHOW NOTESFollow Irene @fityourface_ on InstagramListen to 28 Reasons to Nasal Breathe from Ask The Dentist podcastSPONSORSNational Down Syndrome SocietyiCanShine ProgramsDown for GreensRods HeroesJOIN THE LUCKY CREWJoin us in celebrating and supporting The Lucky Few Podcast! For just $4.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Enjoy bonus episodes where we dive deeper into the most controversial issues, shop discounts, and more! Become an essential part of The Lucky Few movement today!
In CI News this week: A top lawyer warns that Liam McArthur's assisted suicide Bill discriminates against people with disabilities and breaches their human rights, the Equality watchdog instructs multiple organisations to comply with single-sex space regulations, and a British toddler with Down's syndrome will feature in a US billboard campaign to tackle prejudice. You can download the video via this link. Featured stories Top lawyer: Liam McArthur's assisted suicide Bill discriminates against those with disabilities EHRC acts over non-compliance with single-sex space law Marriage breakdown leads to poor GCSE results, warns think tank Chelmsford toddler to be on Times Square billboard for Down Syndrome campaign
In this reposted episode, Courtney shares her journey of receiving her daughter Annie's Trisomy 21 diagnosis, navigating the NICU, and walking through open-heart surgery complicated by pulmonary hypertension. She talks about the power of community, the unexpected strength she discovered in herself, and how vulnerability and advocacy have shaped her motherhood. Courtney reminds us that love, connection, and collective wisdom can carry families through the hardest seasons while celebrating Annie's resilient and joyful spirit. Resources mentioned in this episode: Annie Louise Foundation – A resource hub for parents and caregivers Follow Courtney on Instagram Read Courtney's most recent blog post about how the Annie Louise Foundation helped with Central Texas Flood relief in Kerrville, TX
Nonprofit leadership is about balancing mission, people, and authenticity. In this inspiring episode of IMPACTability®, Frank Bartoli, founder and CEO of PA Inclusive, shares his journey from father and advocate to leader of a thriving nonprofit. Frank opens up about the challenges of staffing shortages, the shifting culture of volunteerism, and why authenticity is the most important leadership trait. He also reveals the surprising success of Coffee Inclusive—a social enterprise employing people with disabilities that has become a model for community engagement. From organizational design and Board responsibilities to evolving fundraising strategies, Frank offers invaluable insight for nonprofit leaders, staff, and Board members alike. Whether you're facing staffing struggles, engaging volunteers, or seeking new ways to stay mission-driven, this episode is packed with lessons for leading with heart and strategy. Prefer video? Watch the full episode on YouTube, https://youtu.be/nfWMofU-nwI Standout Quotes “It's harder to recruit engaged volunteers. The culture of people is really changing.” — on today's biggest nonprofit challenge (18:36) “Nonprofit CEOs need to be very well versed in organizational design.” — on what leaders must master to succeed (29:27) “Authenticity is key to our success.” — on the most important leadership trait (39:51) Chapters & Timestamps 00:00 – Welcome & Frank's Journey to Nonprofit Leadership 04:32 – Inclusion in Action: Understanding IDD Services 10:09 – What Inspires the Work: Lessons from Family & Community 14:09 – The Realities of Nonprofit Leadership 18:36 – Staffing Shortages & Volunteer Engagement Challenges 25:29 – Coffee Inclusive: A Nonprofit Success Story 29:27 – Essential Advice for Nonprofit CEOs & Boards 36:16 – Fundraising Trends & the Power of Authenticity 41:21 – Boundaries, Training, and Final Takeaways Guest Bio Frank Bartoli is the founder and CEO of PA Inclusive and Coffee Inclusive, organizations dedicated to building inclusive opportunities for people with disabilities. With more than 30 years in nonprofit leadership—including roles with The Arc, the YMCA, and multiple Boards—Frank has consistently championed innovation and community engagement. Inspired by his daughter Ellie, who has Down Syndrome, Frank created PA Inclusive to ensure that people with disabilities can live and work in truly inclusive communities. Under his leadership, Coffee Inclusive has become a successful social enterprise, training and employing people with disabilities while reshaping perceptions in the community. Frank has also served on the Governor's Advisory Committee for People with Disabilities and continues to advocate nationally for authentic leadership and inclusion. His journey offers nonprofit leaders practical lessons on staffing, fundraising, Board engagement, and the power of authenticity in driving real change. Resource Mentioned Asking (book) by Jerold Panas:
Another life update, but make it deranged. Between health scares, multiple weddings, accidental fatherhood, and bank accounts running on fumes, you're gonna wanna sit down for this. Follow Jenhan on Instagram at:https://www.instagram.com/kuahjenhan/#youmightwannasitdownforthispodcast __CHAPTERS00:21 - Where are our patriotic bangers 01:10 - Getting each other stuffed 02:30 - Graeme is living in humble brag 05:15 - Does Jenhan actually hate Graeme?05:55 - Inserting things into eyeballs07:00 - Snuggling open chinese arms 08:50 - SG food redemption tour 11:45 - Getting married to the stage 13:40 - Getting married thrice! 18:50 - Gaining a Daddy20:10 - Does my dog have down-syndrome? 24:20 - 8.8 Bazonka Magnitude Blood Pressure31:45 - WE'RE GOING TO JAPAN (again)! 37:00 - How to drink your bank account43:30 - Crying in the comedy club47:00 - ALLEGEDLY. ALLEGEDLY.48:00 - Allegedly octopi are building cities 51:15 - Allegedly AI is bypassing their creators52:22 - Allegedly pigeons can export jpegs 52:20 - Allegedly Mingyue is touring Australia54:46 - Allegedly badminton kills 57:00 - Not allegedly, we love you.
Holly and her son Nate join this week's episode! Nate is the 22-year-old founder of 21 Pineapples, a Hawaiian shirt company on a mission to spread joy, break stereotypes, and change the world with love. Nate, who has Down syndrome, shares his humor, wisdom, and heartfelt outlook on life reminding us all to “be a good human.” Holly opens up about their journey, the challenges and gifts of parenting, and her own resilience as a cancer survivor. Together, they discuss family, acceptance, and why embracing the unexpected can lead to the most beautiful parts of life. Follow Nate (21 Pineapples): @21pineapplesshirtco Follow Holly: @hollywould11 Follow Morgan: @webgirlmorgan Follow Take This Personally: @takethispersonallySee omnystudio.com/listener for privacy information.
Dr. Paola Vidal Rojo from Red Down Mexico joined the podcast to discuss the organization and the work being done in Mexico to provide healthcare for people with Down syndrome. To find out more about this organization, got to https://red-downmexico.org. 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.
La Dra. Paola Vidal Rojo, de Red Down México, se unió al podcast para hablar sobre la organización y el trabajo que se realiza en México para brindar atención médica a las personas con síndrome de Down. Para obtener más información sobre esta organización, visite https://red-downmexico.org. Si desea sugerir un tema para que lo tratemos en el podcast, envíe un correo electrónico a DownSyndromeCenter@chp.edu. Si desea colaborar con el Centro de Síndrome de Down, incluyendo este podcast, visite https://givetochildrens.org/downsyndromecenter. Agradecemos la generosa donación de Caring for Kids – The Carrie Martin Fund, que financia el equipo de grabación y los costos de alojamiento del podcast.
Cultural Connections with Father Mitch Pacwa S.J. is a discussion over the situation with Russia and Ukraine. Emily Wilson Hussem and Daniel Hussem discuss their upcoming app launch called Sacred Spark, designed to bring dating Catholics together. Plus, Dr Theresa Farnan joins to discuss how some physicians are attempting to screen or "weed out" Down Syndrome.
On this week's episode of The 1 Girl Revolution Podcast, we welcome Collette Divitto — entrepreneur, baker, author, speaker, and founder of Collettey's Cookies and Collettey's Leadership Program. You may know Collette from her inspiring story that went viral in 2016, when she turned rejection into fuel for her mission and built a cookie empire. After facing countless job rejections because she was born with Down Syndrome, Collette decided to create her own path and founded Collettey's Cookies — not only to share her delicious “Amazing Cookies” with the world, but also to create meaningful jobs for people with “different abilities.” Since then, Collette has been featured on CNN, Good Morning America, ABC World News, People Magazine, BBC, and many other media outlets. She's sold over 500,000 cookies, built a thriving company in Boston that now employs 15+ people (several with disabilities), and continues to grow her mission of empowerment and inclusion. But Collette's story doesn't end with cookies. Through her nonprofit, Collettey's Leadership Program, she provides entrepreneurship and leadership training to people with disabilities, helping them discover their abilities, build confidence, and pursue their dreams. She also travels the country as a speaker and advocate, and one of her ultimate goals is to work with lawmakers in Washington, D.C. to create more employment opportunities for people with disabilities. In this episode, you'll hear: ✨ Collette's journey growing up with Down Syndrome and discovering her passion for baking; ✨ The story behind her now-famous Collettey's Cookies; ✨ How she turned rejection in the job market into an opportunity to launch her own business; ✨ The growth of Collettey's Cookies and its mission to employ people with disabilities; ✨ Her advocacy work and her dreams for systemic change in the world; ✨ And so much more!
Vincent Igoe was a bagger at Whole Foods for more than 20 years until the company terminated his employment.
This summer, we're revisiting some of Hina and Marla's greatest hits from the first 10 seasons of The LowDOWN. On Season 9, Episode 2 of The LowDOWN: A Down Syndrome Podcast, Abby Rowley and Michele Mattox give us the lowdown on counseling adults with Down syndrome.Support the showThe LowDOWN: A Down Syndrome Podcast is produced by the Down Syndrome Resource Foundation. Learn more and support the podcast at DSRF.org.Follow @DSRFCanada on Facebook, Instagram, and Twitter.Leave us a rating and review on Apple Podcasts.
Reject the lie that disability devalues life. Instead, uphold God's truth that every life—no matter how broken—is sacred and worthy of protection. -------- Thank you for listening! Your support of Joni and Friends helps make this show possible. Joni and Friends envisions a world where every person with a disability finds hope, dignity, and their place in the body of Christ. Become part of the global movement today at www.joniandfriends.org Find more encouragement on Instagram, TikTok, Facebook, and YouTube.
Holly and her son Nate join this week's episode! Nate is the 22-year-old founder of 21 Pineapples, a Hawaiian shirt company on a mission to spread joy, break stereotypes, and change the world with love. Nate, who has Down syndrome, shares his humor, wisdom, and heartfelt outlook on life reminding us all to “be a good human.” Holly opens up about their journey, the challenges and gifts of parenting, and her own resilience as a cancer survivor. Together, they discuss family, acceptance, and why embracing the unexpected can lead to the most beautiful parts of life. Follow Nate (21 Pineapples): @21pineapplesshirtco Follow Holly: @hollywould11 Follow Morgan: @webgirlmorgan Follow Take This Personally: @takethispersonallySee omnystudio.com/listener for privacy information.
In this episode, MediaMaker Spotlight producer Brandon Ferry sits down with two visionary directors whose films were screened at this year's Ebertfest film festival held at the Virginia Theater in Champaign, Illinois. Brandon first speaks with trailblazing director of the 80s and 90s, Susan Seidelman, best known for directing the cult classic, DESPERATELY SEEKING SUSAN (rapturously received at Ebertfest), as well as the pilot and multiple episodes of SEX AND THE CITY, and the early-90's Meryl Streep dark comedy, SHE-DEVIL. The conversation explores Susan's four-decade career directing genre-blending films that reflect her passion for classic Hollywood storytelling, mixed with a playful New Wave spirit– informed by her years living in downtown NYC. Susan also touches upon her recently-released (not to mention sharp-witted) book, titled Desperately Seeking Something: A Memoir About Movies, Mothers, and Material Girls.Next, Brandon has an insightful conversation with up-and-coming writer-director, David Fortune, whose moving feature film debut, COLOR BOOK was warmly received by Ebertfest's audience. COLOR BOOK beautifully tells the story of a devoted single father (William Catlett) embarking on a journey through Metro Atlanta with his 11-year-old son with Down Syndrome (newcomer Jeremiah Daniels) to attend their first baseball game together. Recently named one of Variety's 10 Directors to Watch in 2025, David financed COLOR BOOK after winning AT&T and Tribeca Film Festival's $1 million Untold Stories prize in 2024. David dives deep into his journey writing and directing his debut feature, the challenges he encountered, and the incredible success he has achieved getting his film financed, developed, and screened across the country at numerous film festivals. Check out these behind-the-scenes interviews, recorded on location, direct from the festival with producer Brandon!Learn more about Ebertfest Film Festival: https://www.ebertfest.com/ Check out Susan Seidelman's book: Desperately Seeking Something: A Memoir About Movies, Mothers, and Material Girls (which can be found wherever books are sold). https://us.macmillan.com/books/9781250328229/desperatelyseekingsomething/ Watch the trailer for David Fortune's award-winning debut film COLOR BOOK: https://www.youtube.com/watch?v=go9ZqJJq7f0---Subscribe to learn more about filmmaking, production, media makers, creator resources, visual storytelling, and every aspect that brings film, television, and video projects from concepts to our screens. Check out the MediaMakerSpotlight.com show page to find even more conversations with industry professionals that inspire, educate, and entertain!We on the Women in Film & Video (WIFV) Podcast Team work hard to make this show a great resource for our listeners, and we thank you for listening!
The guys get together to discuss topics such as UFC 319: Dricus De Plessis defending his middleweight title against Khamzat Chimaev, Kayleigh Williamson the first women with Down Syndrome to finish the New York City marathon and the Hulk Hogan co-founded a beer brand called Real American Beer and much more on this episode that you do not want to miss and make sure to tune in!
In this episode of 'Pushing Forward with Alycia,' host Alycia Anderson welcomes Cecilia Elizalde, a passionate advocate for disability inclusion. Cecilia shares her transformative journey from a successful TV producer to a dedicated advocate after her daughter, Valentina, was born with Down syndrome. She discusses her impactful work with Best Buddies International and the launch of Eunie's Buddies, a program offering support and mentorship to families receiving an intellectual or developmental disability diagnosis. Together, Alycia and Cecilia delve into the significance of delivering diagnoses compassionately, the power of community, and the importance of self-care for caregivers. Cecilia also shares inspiring success stories and valuable advice for new parents navigating similar experiences. In-Depth Timeline of the Discussion 00:00 Introduction to Pushing Forward with Alycia 00:25 Meet Cecilia Elizalde: A Powerhouse Mama 02:04 The Life-Changing Birth of Valentina 04:39 Advice for Parents and Medical Providers 08:47 From TV Producer to Advocate 11:33 Eunie's Buddies: Building a Supportive Community 22:07 How to Get Involved with Eunie's Buddies 24:56 Final Thoughts and Pushing Forward Moment A Quote from Cecilia Elizalde “It's amazing with people with intellectual and developmental disabilities, it's like a drop of water that just ripples, and everybody benefits from their presence.” ~ Cecilia Elizalde Core Ideas in Focus
On this week's episode of The 1 Girl Revolution Podcast, we welcome Amanda Booth — model, actress, advocate, and mother. You may know Amanda from her incredible modeling career, from national campaigns for Lancôme, Target, and True Religion, or from her appearances in Parents, Harper's Bazaar, and People magazines. But in this deeply personal and powerful episode, Amanda opens up about a very different part of her journey — motherhood, advocacy, and life with her son Micah, who has Down Syndrome and nonverbal autism. When Amanda and her husband, Mike, became parents to Micah, their world shifted — and so did their purpose. Instead of hiding behind the camera, they stepped into the spotlight to share their story, spread love and awareness, and break down harmful stereotypes around Down Syndrome and disability. Through storytelling, modeling, fashion, and everyday family life, Amanda has become a leading voice in the Down Syndrome community and a fierce advocate for inclusion and representation. In this episode, you'll hear: ✨ Amanda's journey from international fashion model to proud mother and advocate; ✨ Micah's birth story — and how his life changed Amanda's perspective on life and purpose; ✨ How Amanda uses storytelling, photography, and social media to raise awareness and build community; ✨ The beauty and joy of life with Micah — and what he teaches her every day; ✨ The importance of inclusion in fashion, media, and society; ✨ Amanda's advice to parents navigating a diagnosis or raising a child with different needs; ✨ And so much more! Follow their journey: Follow Amanda @amanda_booth and Micah @lifewithmicah on Instagram to see their beautiful family, learn more about advocacy, and join the conversation around inclusion and love. Listen + Subscribe: Don't miss this heartfelt, honest, and inspiring conversation — and so many others! Listen to The 1 Girl Revolution Podcast on Apple Podcasts, Spotify, YouTube, and be sure to subscribe to stay up-to-date with our latest episodes. ✨ Join the movement to empower women and girls — and change the world, one story at a time. For more information, visit: 1GirlRevolution.com
After so many years in the Down syndrome community, we've had our fair share of surprising and even disappointing experiences with other advocates. The more we put ourselves out there, the more opportunity there is for disagreement. So what happens when there's division amongst mothers in the Down syndrome community? Join us for a chat about:Unwritten rules and competition.. what happened to collaboration?Managing intellectual property.. what belongs to the individual vs the community?Social media stand-offs.. how do we engage in productive conversations?Ironically, the DS community doesn't always feel inclusive. So what can we do to support the bigger picture even if we disagree on smaller things? Lets start by assuming the BEST in each other. SHOW NOTES154. Community Over Competition ft. Chantele Holm SPONSORS National Down Syndrome SocietyiCanShine ProgramsDown for GreensRods Heroes
Rich E Rich and Ricky's bet has come due :: Can the dollar reach 0? :: Update on Ian's appeal failing :: RussiaGate :: Trump paranoid that his name was planted on the Epstein List :: Turd calls to say he hates Ricky :: Conspiracy to get men attracted to Down Syndrome girls :: Sydney Sweeny Nazi propaganda? :: Need for donated organs, so should the definition of death be broadened? :: Transplant surgeons breaking the rules :: Stem cells and clones :: Immigration not in the constitutional purview :: RFK jr finds dozens of organ donors may not have been dead :: Wisconsin pizza shop accidentally doses their customers with THC :: 2025-08-03 Hosts: Bonnie, Rich E Rich, Angelo
[see footnote 4 for conflicts of interest] In 2021, Genomic Prediction announced the first polygenically selected baby. When a couple uses IVF, they may get as many as ten embryos. If they only want one child, which one do they implant? In the early days, doctors would just eyeball them and choose whichever looked healthiest. Later, they started testing for some of the most severe and easiest-to-detect genetic disorders like Down Syndrome and cystic fibrosis1. The final step was polygenic selection - genotyping each embryo and implanting the one with the best genes overall. Best in what sense? Genomic Prediction claimed the ability to forecast health outcomes from diabetes to schizophrenia. For example, although the average person has a 30% chance of getting type II diabetes, if you genetically test five embryos and select the one with the lowest predicted risk, they'll only have a 20% chance2. Since you're taking the healthiest of many embryos, you should expect a child conceived via this method to be significantly healthier than one born naturally. Polygenic selection straddles the line between disease prevention and human enhancement. In 2023, Orchid Health entered the field. Unlike Genomic Prediction, which tested only the most important genetic variants, Orchid offers whole genome sequencing, which can detect the de novo3 mutations involved in autism, developmental disorders, and certain other genetic diseases. Critics accused GP and Orchid of offering “designer babies”, but this was only true in the weakest sense - customers couldn't “design” a baby for anything other than slightly lower risk of genetic disease. These companies refused to offer selection on “traits” - the industry term for the really controversial stuff like height, IQ, or eye color. Still, these were trivial extensions of their technology, and everybody knew it was just a matter of time before someone took the plunge. Last month, a startup called Nucleus took the plunge. https://www.astralcodexten.com/p/suddenly-trait-based-embryo-selection
Rich E Rich and Ricky's bet has come due :: Can the dollar reach 0? :: Update on Ian's appeal failing :: RussiaGate :: Trump paranoid that his name was planted on the Epstein List :: Turd calls to say he hates Ricky :: Conspiracy to get men attracted to Down Syndrome girls :: Sydney Sweeny Nazi propaganda? :: Need for donated organs, so should the definition of death be broadened? :: Transplant surgeons breaking the rules :: Stem cells and clones :: Immigration not in the constitutional purview :: RFK jr finds dozens of organ donors may not have been dead :: Wisconsin pizza shop accidentally doses their customers with THC :: 2025-08-03 Hosts: Bonnie, Rich E Rich, Angelo
Summer isolation for our kids with disabilities.. It's not fun to talk about.. which means we probably should. Lets unpack it:Why is no one reaching out to our children to hang out over the summer?What happens when full inclusion during the school year still doesn't foster meaningful friendships for your child?What do we do with these feelings of loneliness? How do we talk to our kids about this? With our kiddos growing up, we've noticed huge changes in the social dynamics that have left our kids with disabilities feeling lonely over summer break, especially when compared to their neurotypical siblings. If you're a parent to a child with a disability, you may have noticed this as well. We might not have all the answers but we want you to know: we see you and we are cheering you on in this!--SHOW NOTES297. Extracurricular Activities and Inclusion: How to Make it Work for Our Kids with DS215. Disability Access Services at Theme Parks213. The Beauty and Challenges of Adaptive Programs164. Choosing Your Summer BattlesSPONSORS National Down Syndrome SocietyiCanShine ProgramsDown for GreensRods HeroesJOIN THE LUCKY CREWJoin us in celebrating and supporting The Lucky Few Podcast! For just $4.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Enjoy bonus episodes where we dive deeper into the most controversial issues, shop discounts, and more! Become an essential part of The Lucky Few movement today!
Taylor Arbeau is a firecracker. A passionate photographer, musician, and former Special Olympics athlete, she also happens to live with Down syndrome — mosaic Down syndrome, to be exact (yeah, we had no clue what that was either). In this candid convo, Taylor drops truth bombs about growing up “different,” discovering self-love, and calling bullshit on assumptions people make about her. She opens up about dating, her dreams of becoming a mom, and the unexpected ways Down syndrome has shaped her art and identity.This episode is all heart and zero pity. It's a celebration of difference, determination, and the power of proudly being yourself — even if you might have a tiny bit of road rage.Follow Taylor's work on Instagram:Photography: @beausphotos3Music: @taylorandmusic.3
In this current political climate, one of our goals is to keep you all up to date on the legislature that impacts our community. So friends, its time to talk about the “Big, Beautiful Bill” and how it will affect individuals with Down syndrome. We are SO grateful for an incredible guest to help us out. Sean Feely is the new Director of Advocacy and Policy at the National Down Syndrome Society and he's here today to answer all of our questions..The basic questions: What exactly is the “Big, Beautiful Bill”? What exactly is medicaid?The complicated questions: Are home and community-funded services in danger? What are the new rules around work requirements and retroactive coverage?The scary questions: Will my loved one with DS lose their coverage? We're also asking the productive questions.. What can we do now? What sources can we trust? Grab a pen and get ready to take some notes! --SHOW NOTESSign up for the National Down Syndrome Society's newsletter HERE.Listen to our episode with Charlotte Woodward about organ transplant discrimination HERE.SPONSORS National Down Syndrome SocietyiCanShine ProgramsDown for GreensRods HeroesJOIN THE LUCKY CREWJoin us in celebrating and supporting The Lucky Few Podcast! For just $4.99 a month, you can help us continue shouting worth and shifting narratives for people with Down syndrome. Enjoy bonus episodes where we dive deeper into the most controversial issues, shop discounts, and more! Become an essential part of The Lucky Few movement today!
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