M. Austin Stack
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M. Austin Stack has been a member of the rare disease community since 1996, when he was born with a rare disease called X-linked agammaglobulinemia (XLA). Austin has now positioned himself to become an influential member in the community and advocacy landscapes. 
 

Using XLA as an empowering opportunity rather than a burden, Austin became passionate about the immune system and its countless complexities. Austin majored in Microbiology & Immunology at McGill University to gain a deeper understanding of the immune system and how XLA affects his own body. In January 2020, Austin joined the Immune Deficiency Genetics Section at the National Institute of Allergy and Infectious Diseases. There, Austin contributed as a key player in the NIAID COVID Consortium and the NIAID COVID Vaccine Study. Austin led several projects including a biomarker analysis of XLA patients in the context of COVID-19 and a review of BTK inhibitor use in COVID-19, presenting results at conferences for the European Society for Immunodeficiencies and the Clinical Immunology Society. Austin has contributed to six peer-reviewed publications, with more on the way.


Austin’s experience in advocacy began at the young age of 13 when he started public speaking as a patient representative for St. Jude Children’s Research Hospital. Austin was introduced to legislative advocacy in 2019 through the Immune Deficiency Foundation. 
 

Austin hopes to develop projects that will positively impact the rare disease community, eliminate inefficiencies in translational research, and create patient-centric initiatives that improve the healthcare system for all.  

Rare Disease Community-based Expertise:

  • Nonprofit Organization

  • Fundraising

  • Research

  • Project Management

  • Scientific Writing/Communication

  • Advocacy Partnerships 

  • Public Speaking

  • Legislation/Lobbying 

  • Story Telling