FASD United

Video Series from CDC Powerfully Highlights the Living Experience of People with FASD 

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by

Andy Kachor
in

We are thrilled to announce the release of a powerful and insightful new video series on “Lived Experiences with Fetal Alcohol Spectrum Disorders” now available from the CDC.  The CDC and its partners have been crucial to our work and to advancing the FASD field for many years, and this video series takes our collaborative efforts to the next level. 

The video series consists of in-depth pieces featuring individuals with FASD and their families sharing their wisdom and deeply personal perspectives­­­­. The videos highlight how FASD is a disability that is so often non-apparent, unrecognized, misunderstood, and stigmatized.   

Please join us in promoting this incredible video series: 

  • Attend a Virtual Watch Party on Wednesday, January 15, 2025 from 6:00pm – 7:30pm ET. Sign up to watch 8 videos from the series virtually on Zoom and join FASD partners, advocates, and allies.  

We know that every individual with FASD is unique, and this video series powerfully captures the diversity of the FASD experience, across the spectrum. If you’ve met one person with FASD, you’ve met ONE person with FASD. Thanks to this video series, you will meet many amazing people with FASD, each with their own incredible story of finding strength when faced with challenges, whether in school, fitting in with friends and family, or starting a life of their own. 

Collectively, the series “shines a light on the triumphs and challenges of individuals and families living with FASDs.” The series was developed as part of the CDC-funded FASD National Partner Network. Oak Ridge Associated Universities and FASD United partnered on the series. 

The video series features: 

  • Self-advocate Emily talks about navigating a healthcare system that lacks recognition and holistic care for people with FASD. Ultimately, Emily’s story is one of strength and resilience. In her own words, “We might be running the race with a few extra weights in our backpack, but that makes us strong.” 
  • Sean Patrick and his mother Laura share how diagnosis was a key turning point in both of their lives, with Sean diagnosed as a teen and Laura at age 57. They share a powerful story of how they often find themselves being the ones to educate their healthcare providers about FASD. We are so proud of Laura, who is part of FASD United’s Family Navigator team, as she shares her perspective as a parent and self-advocate. 
  • Rebecca shares about finally getting a diagnosis at age 34, saying, “We all have strengths with an FASD, and you will find yours if you don’t know them already.” In her video, she focuses on her many successes, including advocacy work for the FASD community. Rebecca is the founder of the Run FASD virtual 5K fundraiser event.   
  • Annette highlights the resilience and perseverance of her two sons who both have FASD. In her words, “The one great strength of our kids is they get up every day; I can’t imagine how strong and brave they are.” Annette is a longtime member of FASD United’s Affiliate Network and recently joined advocates from across the country in our annual Hill Day event in September. 

The video series also includes four special themed videos, each on a key topic related to FASD. In addition to providing powerful engaging content for the FASD community and empowering individuals by amplifying their voices, the videos educate the public and systems of care about FASD and how to better serve people with FASD. 

By hearing directly from people with FASD about the stigma, discrimination, and challenges they face in obtaining a diagnosis, healthcare professionals can adjust their approaches and provide care that is affirming and effective. By capturing the FASD experience across the lifespan, the videos empower systems of care to support individuals from childhood and adolescence, through adulthood. 

In celebrating the resilience of people with FASD and their families, the video series breaks through the stigma that surrounds FASD. The videos show that individuals with FASD are powerful, and when given the supports they need, their success enriches the entire community. 

  • One video features recommendations on obtaining diagnoses of FASDs. Many of these lessons were learned the hard way, through a series of misdiagnoses and missed diagnosis. As Rebecca puts it, “I was relieved, because everything from my childhood, of being ‘quirky’ made sense.” This topic is especially important right now, as the FASD field is currently facing a challenge to the value of an FASD diagnosis. 
  • A video on support and care emphasizes the crucial need for increased understanding of FASDs among healthcare professionals, while a video on stigma is an urgent call for healthcare professionals and society to work together to tackle the harms of stigma and promote understanding. We are inspired by Emily’s challenge for providers to “take off those ‘preconceived notion’ glasses” and to look at people with FASD not as “the paragraph that they read in their textbook” but as “someone who needs a unique approach to healthcare.” 
  • A wonderful video on celebration and resilience shows the importance of building on strengths. As Laura says, “With FASD, we all have strengths, we all have challenges. It’s focusing on those strengths. What is that individual’s superpower?”  This video provides an opportunity to recognize the joy and love that people with FASD bring to their families, friends, and communities.  

Please contact Katherine Chyka at ORAU (Katherine.Chyka@orau.org) for more information on how you promote the video series. The videos can be incorporated into trainings, webinars, podcasts, blogs, and even conference exhibit booths. Remember to use the hashtag #FASDNPN when sharing on social media. Upcoming awareness observances are a great opportunity to share the videos, including Birth Defects Awareness Month in January and FASD Awareness Month in September. 

We’d like to thank our ORAU partners and in particular acknowledge the work of Katherine Chyka, Betsy Smither, and Jennifer Reynolds.  Thank you so much to everyone who participated in this project and courageously and thoughtfully shared their stories: Annette, Emily, Jen, Julie, Patima, Rachel, Rebecca, Sean Patrick, Laura, Wyatt, and Debbie. 

We know that this video series will continue our movement towards a more inclusive, just, and supportive world for individuals with FASDs.  The video series can be accessed through the CDC website.