Angelman Syndrome Foundation Podcast

Share Your Feedback or Recommend New Topics In this episode, ASF CEO Amanda Moore is joined by Christian Pache, an Angelman dad and ASF board member; Anthony Lucero, the filmmaker behind The Paper Bag Plan; and Tina Taosoga, an Angelman mom and longtime advocate. The discussion centers on Anthony’s film The Paper Bag Plan, a deeply personal story inspired by real experiences within the disability community. Together, they explore the emotional realities caregivers face, the importance of fostering independence at every ability level, and the question so many families carry: What happens when I’m no longer here? This episode highlights the often unseen strength of caregivers, the value of planning ahead, and the hope that comes from community, representation, and shared understanding. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

Share Your Feedback or Recommend New Topics The holidays can be joyful – and overwhelming – especially for families caring for someone with Angelman syndrome. In this episode, ASF Family Resource Director Kathryn Ely is joined by licensed professional counselor Shannon Barlow, LCPC, to talk openly about protecting mental health during the holiday season. They discuss managing expectations, navigating grief, supporting siblings, asking for help, and finding moments of joy through radical honesty, realistic boundaries, and intentional self-care. This conversation offers reassurance, practical guidance, and a reminder that the holidays don’t have to be perfect to be meaningful. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

Share Your Feedback or Recommend New Topics In this episode, Amanda sits down with Abby Zachritz, better known as Advocacy Abby, the Director of Family Advocacy at Support Now and creator of the Connect grants database. Abby shares how her personal journey as a mom navigating the disability world inspired her to help other families access financial assistance for therapies, adaptive equipment, and more. Together, they discuss how Support Now’s all-in-one platform simplifies fundraising and connects families to thousands of verified grants, so no one has to face financial barriers alone. Whether you’re just beginning your journey or searching for better resources, this conversation is filled with encouragement, practical advice, and proof of the strength found in community. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

Share Your Feedback or Recommend New Topics ASF CEO Amanda Moore talks with former Congressman Erik Paulsen, Chairman of the Institute for Gene Therapies, about how policy and advocacy are shaping the future of gene therapy for rare diseases like Angelman syndrome. They discuss the need for modernized healthcare policies, better access to treatment, and how collaboration across patient groups and policymakers can help make life-changing therapies available to all. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

Share Your Feedback or Recommend New Topics Tired nights, travel challenges, and endless insurance hurdles... sound familiar? In this episode, guest host Liz Thompson, Development Director at ASF, talks with Jon and Amara Smith, Angelman parents and founders of Safe Place Bedding, about practical ways families can create safer, calmer sleep spaces. They share tips for traveling, navigating insurance coverage, and choosing the right safety bed. Plus, how their partnership with ASF helps families “live without limits.” + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

Share Your Feedback or Recommend New Topics In this episode, guest host Kathryn Ely, ASF's Family Resource Director, leads a candid discussion with ASF’s Adult Housing Champions, a group of parents and caregivers navigating the complex world of adult housing for individuals with Angelman syndrome. Hear from each Housing Champion about emotional decisions, practical advice, and their inspiring stories of independence and community connection. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

Share Your Feedback or Recommend New Topics In this ASF podcast episode, guest host Chloe Knouff brings together siblings and relatives of individuals living with Angelman syndrome to explore how their loved ones inspired their careers. From special education and disability support to genetic counseling, research, and public health, each guest shares a deeply personal journey of resilience, advocacy, and self-discovery. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

Share Your Feedback or Recommend New Topics Toileting is one of the most common (and often most challenging) milestones for individuals with Angelman syndrome. In this episode, Dr. Colin Muething, Director of the Complex Behavior Support Program at Marcus Autism Center, shares practical, evidence-based strategies for toilet training children and adults with developmental disabilities. From readiness signs and starting early, to overcoming public restroom fears, addressing constipation, and ensuring school collaboration, Dr. Muething explains why he believes every person is trainable. Learn how to set realistic goals, maintain consistency, and celebrate progress.

Share Your Feedback or Recommend New Topics In this episode of the ASF Podcast, CEO Amanda Moore welcomes Hannah Oppenheim, a neurodevelopmental disability fellow, to discuss the history of disability rights and ableism in medicine. They explore key legislation like Section 504, IDEA, and the ADA, the challenges individuals with disabilities face in healthcare, and the shift toward a social model of disability. Hannah emphasizes the importance of advocacy, inclusion, and ensuring individuals with Angelman syndrome receive the care and support they deserve. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

Share Your Feedback or Recommend New Topics In this episode of the ASF Podcast, CEO Amanda Moore speaks with filmmaker Amber Sealey about her Disney+ film Out of My Mind, which highlights the journey of a young girl with cerebral palsy. They discuss the importance of disability representation in media, presuming competence in non-verbal individuals, and the realities of caregiving. Amber shares her personal connection to advocacy, the challenges of making the film, and how storytelling can amplify the voices of those with disabilities. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

Share Your Feedback or Recommend New Topics In this episode of the ASF podcast, recorded at the 2024 ASF Family Conference, Dr. Rebecca Burdine unpacks the genetics of Angelman syndrome, focusing on the UBE3A gene and its critical role in the brain. She also discusses current therapeutic advancements that offer hope for improving the lives of those with Angelman syndrome. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

Share Your Feedback or Recommend New Topics In this episode, CEO Amanda Moore is joined by Bryan LaScala, CEO of the NAPA Center. Bryan shares the inspiring story of how his mother’s determination to help her son led to the founding of this groundbreaking therapy center. Bryan dives into the benefits of intensive therapy, the individualized approach at NAPA, and how the center supports families navigating complex care journeys. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

In this episode, Dr. Mark Nespeca lays the groundwork by identifying and explaining the types of seizures commonly seen in individuals with Angelman syndrome. Dr. Ron Thibert then delves into treatment options and discusses Non-Convulsive Status Epilepticus (NCSE). Dr. Robert Carson wraps up the episode with crucial insights on seizure preparedness and his groundbreaking research on NEM / tremors. You'll gain valuable knowledge and strategies to manage epilepsy effectively. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

People with Angelman syndrome demonstrate a higher than average response to dietary therapy. This podcast provides a better understanding of what dietary therapy is, what benefits are seen and who benefits most, as well as side effects. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

Angelman mom, Lisa Jamieson from Walk Right In Ministries, a faith-based organization that supports caregivers, joins CEO Amanda Moore to discuss Lisa's personal experiences as a caregiver and insights on supporting the mental wellbeing of those supporting loved ones with Angelman syndrome. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

Guest hosts AJ and Chloe Knouff are joined by Haily Green of Wondermakers Travel. They talk all things travel including planning, special considerations and tips for trips to Disney. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

Amanda Moore, Angelman Syndrome Foundation CEO, shares the top 10 questions she is asked and how she answers those questions. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

Christopher Keary, MD, Behavioral Director at the MGH Angelman Syndrome Clinic, and Cesar Ochoa-Lubinoff, MD, MPH, ASF Clinic Director at Cedars-Sinai, offer valuable insights on evaluation, management, and recommended treatment options for unique and challenging behaviors in Angelman syndrome. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

Inspiring mother, advocate and runner, Deanna McCurdy, talks with CEO Amanda Moore about uniting her passion and purpose to create Team Miles for Smiles. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.

ASF CEO Amanda Moore talks with parents of individuals with AS about the various genotypes and their experiences with how each genotype presents. + + + Learn more about Angelman Syndrome Foundation at Angelman.org. Follow us on Facebook and Instagram and connect with our community. Find an Angelman Syndrome Foundation Clinic at Angelman.org/as-clinics.