Sights and Sounds
Videos, interviews, and podcasts on SCID topics or featuring SCID Angels for Life Foundation
In Episode 11 of “Slice of PI” Heather Smith is interviewed on the topic “The Impact of Foundations“. Listen as she discusses the impact of foundations and the role SCID Angels plays when it comes to providing support for patients and families with SCID. “Slice of PI” is presented by CIPO, The Canadian Immunodeficiencies Patient Organization. A podcast by and for patients living with primary immunodeficiency (PI). “A Slice of PI” explores the diverse experiences of people living with PI through reflexive investigation of the social and emotional well-being of people living with these diseases.
In Episode 10 of the “Newborn Screening SPOTlight Podcast” Barb Ballard is interviewed on her role with SCID Angels for Life Foundation and her personal history with SCID. NBSTRN is the Newborn Screening Translational Research Network and is a component of the Hunter Kelly Newborn Screening Program at the Eunice Kennedy Shriver National Institutes of Child Health and Human Development through a contract with the American College of Medical Genetics and Genomics.
Adventuring with Medically Complex Kids with Meghan Garriott
Meghan Garriott is a Physical Therapy Assistant, photographer, and mom of 3 in rural central Illinois. At nine days old, Meghan’s oldest son was diagnosed with severe combined immunodeficiency (SCID), meaning he was born without an immune system. Meghan donated her bone marrow and saved his life. In order to protect a compromised immune system, their family turned to nature and began spending a lot of time outdoors, which has been a safe space for the whole family to grow, learn, and thrive.
Videos
Barb Ballard
Listen to Barb Ballard as she describes the complications resulting from a late diagnosis for her son and advocates for Universal SCID Newborn Screening
Revcovi Townhall
Presented for questions and answers regarding medication for specific SCID patients and changes to the distribution.
Barb Ballard
Barb Ballard at FDA CBER OTAT Patient-Focused Drug Development Listening Meeting, Patient Perspectives on Gene Therapy Products, 12/15/22. The FDA’s Center for Biologics Evaluation and Research (CBER) Office of Tissues and Advanced Therapies (OTAT) hosted a virtual patient-focused drug development listening meeting to better understand patient perspectives on gene therapy products, including cell-mediated gene therapies. Here SCID Angels Director, Barb Ballard, provides the patient’s perspective on the delays and halts to trials due to the high costs associated with bringing a cellular therapy to today’s marketplace through FDA approval.
Heather Smith
Heather Smith at FDA CBER OTAT Public Listening Meeting – Methods and Approaches for Capturing Post-Approval Safety and Efficacy Data on Cell and Gene Therapy Products on 04/27/2023. Here Heather discusses the effects on a patient and their family when a cellular therapy has been halted due to a safety concern.
Other SCID Related Videos
The Boy in the Bubble | Retro Report | The New York Times
2015 Story of David, “The Bubble Boy” produced by the NY Times
Gene Therapy development for XSCID
2016 Video from NIAID. NIAID researchers are using a novel gene therapy approach to successfully treat older children and young adults with X-linked severe combined immunodeficiency.
Newborn Screening for SCID
SCID Rally for Newborn Screening, held during the 2015 Immune Deficiency Foundation National Patient Conference.
Leaky SCID’s:
The Natalie & Alice Fish Story
Symbol of Hope
ADA SCID patient Ramus and his mom describing his journey.
The Surprising Legacy of the Boy in the Bubble | Retro Report on PBS
This story is an excerpt from the broadcast show on PBS. Stream full episodes at https://www.pbs.org/retroreport.
A simple infection can easily kill children with Artemis-SCID in their first year of life if it is left untreated. UCSF Pediatrics professors Morton Cowan, MD, and Jennifer Puck, MD, are leading a clinical trial that involves transferring a normal copy of the mutated gene into patients’ own stem cells.
Self Care Videos
SCID Compass
Mental Health Video in English.
SCID Compass
Mental Health Video with Spanish subtitles (Español)
Parental Mental Health: Experiences Across the SCID Journey Having a child who is facing a life-threatening illness such as SCID can be traumatic. Maintaining mental wellness is an essential part of the SCID journey, both as a patient and as a parent.
Exhaling Anxiety
SCID Angels presented 2 Jin Shin Jyutsu Self Care sessions for families to help them deal with stress and anxiety. Enjoy while Cindy Broshi explains Jin Shin Jyutsu and starts us on a path to relaxation.
Zoom Session
In this 2nd session with Cindy Broshi, she leads a small group through the steps to help combat stress and anxiety using Jin Shin Jyutsu. Join along with this tutorial for a relaxing therapy session.
IDF and SCID Compass Videos
Visit SCID Compass for more SCID videos.