SCID Angels Research Grants

SCID Angels for Life, an IDF SCID Compass partner organization, awards research grants to support SCID research projects. This represents the organization's first foray into funding research.

Funder: SCID Angels for Life (non-profit dedicated to supporting families affected by SCID through social media outreach, education, advocacy, and family scholarships)

Geographic Scope: United States

Focus Areas:

• Gene editing and gene therapy for SCID variants
• Clinical research on SCID in specific populations
• Improving diagnosis and treatment for marginalized communities affected by SCID
• Specific research areas demonstrated by 2022 awards:
  • Gene-editing technology development for IL7Rα SCID treatment
  • RAG1 variant SCID research in Mennonite communities

Award Details:

• One-year grant terms
• 2022 awards: Two research grants awarded to SCID experts
• Program created with $25,000 grant from ADMA Biologics (produces plasma products for people with rare diseases)
• Anonymous donor provided additional funding for an additional research grant

2022 Award Recipients:

1. Dr. Donald Kohn (University of California, Los Angeles) - Gene-editing technology development for IL7Rα SCID treatment. Early-stage research exploring creation of technology to make changes in the IL7Rα gene, with research conducted by junior faculty member at UCLA. Aims to lay groundwork for future testing of the technology.
2. Dr. Jolan Walter (University of South Florida) - Research on RAG1 p.C176F SCID variant in Mennonite communities in Pennsylvania, Virginia, North Carolina, and Ohio. Study aims to:
   • Increase awareness of RAG1 variant among community members
   • Empower community members to seek genetic screening and follow-up care
   • Provide data leading to preventive and therapeutic strategies to reduce disease severity
   • Support those with other variants of atypical (leaky) SCID with variable presentations

Organization Background:

• SCID Angels for Life is long known as a hub where parents of children and adults with SCID can connect and share information
• Dedicated to supporting families affected by SCID through:
  • Social media outreach
  • Education
  • Advocacy
  • Family scholarships
• Partner of IDF's SCID Compass program
• Founder: Heather Smith
• Director: Barb Ballard