articles and announcements

ASF to Host Screening of Caregiver Documentary, Unseen

June 21, 2022

ASF to Host Screening of Caregiver Documentary, Unseen



Angelman Syndrome Foundation is proud to announce the upcoming screening of Unseen: How We’re Failing Parent Caregivers & Why It Matters, a new documentary that takes an honest look at the lives of parent caregivers for children and adults who are disabled or medically complex, and a society that doesn’t adequately support them.

The screening will take place virtually during the screening window of June 23 to 26. Participants can sign up to receive a link to watch on their own time during this time frame. All those participating in the screening are invited to a virtual discussion at 7pm EST on Sunday, June 16. More information and links to screening and panel discussion can be found at

” The message of Unseen is a crucial message of understanding the journey of a caregiver, said ASF Chief Executive Officer Amanda Moore. “At the ASF, we are committed to supporting not only those living with Angelman syndrome, but also those who are caring for those with AS. We are thrilled to partner with the filmmakers to get the message out, and help caregivers have crucial conversations about their needs. We hope this will open dialogue and help others understand how they can support those around them who are caring for others in any walk of life”.

An estimated 16.8 million people in the U.S. are caring for a child with disabilities or complex medical needs. The demands of daily life and chronic stress can negatively affect the mental and physical wellbeing of parent caregivers. With limited accommodations and uncertainty about the future, caregivers often face isolation and exhaustion. In Unseen, parents are brutally honest about their experience, providing insight such as: 

  • “We’re just hanging on by a thread most of the time. The hardest part is that it’s nobody’s fault. It’s not our fault. It’s not his fault. It’s just part of our life.”
  • “Our parenting and caregiving will continue indefinitely, and that’s just overwhelming.”
  • “Most caregivers are not fine, and they are not doing well.”

Video diaries from diverse caregivers featured in the film illustrate the universality of the topics explored, while interviews with mental health and legal experts provide a broader view on the societal impacts.

About the Film

Unseen: How We’re Failing Parent Caregivers & Why It Matters exposes the challenges and barriers faced by many parents caring for disabled or medically complex children and adults, with the goal of increasing support and resources for caregiving families. Through the power of unfiltered, compelling stories, the Unseen documentary cultivates compassion and serves as a catalyst for change for the caregivers in our communities. Learn more at