December 2025 – The Sustaining Work of the DADA2 Foundation
What does 2026 hold for DADA2?
As we head into the new year, we are hopeful that new scientific discoveries and increased support for newly diagnosed patients and their physicians will ultimately improve the lives of patients and help identify the undiagnosed. We invite you to be a part of this important mission with a one-time or monthly gift. Your generous contribution of any size is critical to continue all of the work you see below.
Are you READY to join us?
DADA2 Info Translated to Global Languages
Recently, we worked with Dr. Aura Nzinga, current pediatric rheumatologist at Montefiore Health Center in New York City who plans to transition back to her home country of Kenya.
Dr. Aura helped us translate our DADA2 brochure into Swahili this fall. Translation is expensive because of the medical expertise needed to ensure the information remains accurate. So whenever physicians offer their time to complete these kinds of tasks, we are so grateful! We have other languages in the works!
Dr. Aura will use the translated materials during patient consultations, when educating community health workers, and when providing teaching sessions in rural or resource-limited settings.
Family Spotlight: Encouraging Community
Meet Apoorva from Calgary, Canada. Her six-year-old daughter, Anaisha, was diagnosed with DADA2 in 2021. After more than a month in the hospital with constant fevers, she was finally diagnosed after sending bloodwork to Finland. Says Apoorva:
“I felt so frantic in those early days. But one day, our rheumatologist suggested connecting with the DADA2 Foundation. When I joined the Facebook group that the Foundation organizes, I finally had a community of parents walking a journey similar to ours. We learned from one another, supported one another, and found comfort in shared experiences. Through the Foundation, I now know that there are families like ours and that there is a dedicated network of physicians and researchers who are pioneers in their fields and meeting regularly to discuss advancements. We are a small group but we are not forgotten – and that gives our family hope for a healthier future for our child.“
We wish the best to Anaisha as she finds treatment, and are right alongside her and her family in sharing hope for a cure!
2025: A Year of Critical Research Questions
What’s the latest on PEG-ADA2 & Carrier Status?
Lex Cowsert, Chief Scientific Officer for the DADA2 Foundation, explains in quick videos.
What is the global research community learning about the impact on the health of a carrier? There may be more nuance than we think, according to research by Dr. Isabelle Meyts’ lab in Leveun, Belgium.
We have talked about pursuing a treatment with “PEG-ADA2” – but what does that mean and how far away are we from clinical trials and patient use? Learn about the most foundational science and the path to use.
Q&A With Dr. Pui Lee: The Biology Behind DADA2
When DADA2 was first discovered in 2014, very little was known about the role ADA2 played in the body. Since then, with the encouragement of the DADA2 Foundation, researchers have been attacking the issue from many research angles. The DADA2 Foundation reached out to Dr. Pui Lee of Harvard/Boston Children’s Hospital to learn more about his research on the fundamental biology of ADA2 and why it is important for developing better treatments for DADA2.
Q: Dr. Lee, what are you hoping to understand through your current DADA2 research?
A: My team is trying to understand the chain of events that happens when the ADA2 enzyme is missing or not functioning properly. ADA2 normally helps regulate how certain immune cells behave — especially monocytes and macrophages. When ADA2 is low, these cells can shift into a more inflammatory state. We want to identify exactly how that shift occurs and why it leads to the symptoms families see in DADA2.
Q: Why is inflammation such an important part of this disease?
A: In DADA2, inflammation isn’t random — it comes from specific immune pathways becoming overactive. We are especially interested in how the loss of ADA2 leads to excess production of inflammatory cytokines, including TNF, and how this affects the lining of blood vessels. Understanding these pathways will help us explain why some people develop vasculitis or strokes, while others may experience immune deficiency or bone marrow problems.
Q: How could this research help people living with DADA2 right now?
A: Learning the underlying biology helps us refine treatment. For example, anti-TNF medications work for many families, but not all. By understanding the deeper… (more)
Featured Published Articles on DADA2
Dominant negative ADA2 mutations cause ADA2 deficiency in heterozygous carriers
Marjon Wouters et al, Journal of Experimental Medicine, 27 August, 2025
Sibel Kaplan Sarikavak et al, Frontiers in Immunology, 1 October, 2025
Chiara Rigamonti et al, Molecular Therapy Methods & Clinical Development,
11 December, 2025
Szymon Lulek et al, Frontiers in Immunology,18 November, 2025
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