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. 

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 speaking at The National Academies of Science, Engineering and Medicine, Committee on Newborn Screening: Current Landscape and Future Directions: Meeting 2 held on March 26, 2024. The topic was “Perspectives on the Process of Adding New Conditions“. 

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. 

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.

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. 

A Parent’s Journey with ZAP70 Deficiency

Heather Smith from SCID Angels interviews Angie,  the mother of a boy with a rare form of SCID. 

“Give yourself permission to be joyful.”

A look into the life of Racquel, an adult patient living with ADA-SCID.

Cindy – living with ADA-SCID, helping other people via NAMI

Cindy is an adult patient with ADA SCID. Cindy talks about her role with NAMI, The National Alliance on Mental Illness, helping others to not feel alone.

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.