Angelman Syndrome Foundation Podcast

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Angelman Syndrome Foundation

36 episodes

6 days ago

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 co...

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Episodes (20/36)

Angelman Syndrome Foundation Podcast

Advocacy Abby: Opening Doors to Resources and Relief

6 days ago

45 minutes

Angelman Syndrome Foundation Podcast

Advocating for Access: How Policy Shapes the Future of Gene Therapy

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 Ange...

2 weeks ago

24 minutes

Angelman Syndrome Foundation Podcast

Rest Assured: Safe Sleep for Angelman Families

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 famili...

1 month ago

33 minutes

Angelman Syndrome Foundation Podcast

Planning for the Future: ASF Housing Champions Share Their Journeys

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 Foundatio...

2 months ago

1 hour 6 minutes

Angelman Syndrome Foundation Podcast

Inspired Careers: Siblings and Relatives Share Their Journeys

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. Fol...

2 months ago

49 minutes

Angelman Syndrome Foundation Podcast

Talking Toileting with Dr. Colin Muething

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 en...

3 months ago

57 minutes

Angelman Syndrome Foundation Podcast

The History of Disabilities with Hannah Oppenheim

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 ...

8 months ago

41 minutes

Angelman Syndrome Foundation Podcast

An Interview with "Out of My Mind" Director, Amber Sealey

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 am...

9 months ago

26 minutes

Angelman Syndrome Foundation Podcast

Genetics 101

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 w...

9 months ago

53 minutes

Angelman Syndrome Foundation Podcast

Intensive Therapy: Bryan LaScala and the NAPA Center

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 Angelma...

10 months ago

37 minutes

Angelman Syndrome Foundation Podcast

Epilepsy in Angelman Syndrome

Share Your Feedback or Recommend New Topics 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 man...

11 months ago

59 minutes

Angelman Syndrome Foundation Podcast

Food is Medicine

Share Your Feedback or Recommend New Topics 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.

11 months ago

37 minutes

Angelman Syndrome Foundation Podcast

Decision Fatigue to Peace with Lisa Jamieson

Share Your Feedback or Recommend New Topics 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 Syndr...

11 months ago

42 minutes

Angelman Syndrome Foundation Podcast

Travel Tips

Share Your Feedback or Recommend New Topics 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.

1 year ago

30 minutes

Angelman Syndrome Foundation Podcast