JANUARY 2025: Looking Ahead: 2025 Goals for the DADA2 Foundation
Dear DADA2 Community:
Happy New Year! I hope everyone had a joyful and relaxing holiday season. The start of a new year is always an opportunity to reflect on past accomplishments and set goals for the future. With that in mind, I want to extend a heartfelt THANK YOU to everyone who contributed so generously to our end-of-year giving campaign. Thanks to your support, the Foundation met our fundraising goal, and we begin 2025 with renewed confidence to continue our vital work.
As a reminder, the DADA2 Foundation now holds the intellectual property rights for a promising enzyme replacement therapy to treat DADA2. Our primary objective for 2025 is to secure a partner to help turn this potential into a tangible treatment. Over the past eight months, I’ve immersed myself in the intricate process of drug development—a journey I never expected as an Endocrine Surgeon. Life truly has its surprises!
In addition, the Foundation remains committed to advancing the ADA2 NOW diagnostic meter to diagnose DADA2 and shorten the diagnostic odyssey. We plan to submit a $2 million grant application to complete development and navigate the FDA approval process. This innovative device has the potential to revolutionize DADA2 diagnostics, but widespread physician awareness is critical. To that end, we’ll continue our global outreach and education efforts to ensure that more healthcare professionals recognize and diagnose DADA2.
Above all, the Foundation remains a steadfast source of support for those living with this condition. It’s a privilege to work alongside the extraordinary individuals who make up the DADA2 community, and we’re here to help in any way we can.
Here’s to a year of progress and hope!
Cheers,
Chip Chambers, M.D.
Founder & President, DADA2 Foundation
Spreading Awareness of DADA2
Dr. Pui Lee, from Harvard University and Boston Children’s Hospital, has emerged as a passionate advocate for raising awareness about DADA2. Last November, he traveled to Bucharest, Romania to deliver a presentation titled DADA2: A Consensus Approach for Diagnostic Evaluation and Management at the Immundopedia Conference. He was joined by Romanian colleagues, Alexis Cochino & Oana Farkas, Andreea Ioan from Utrecht University, Netherlands and Marco Gattorno from Istituto G. Gaslini, Genoa, Italy (see photo). The DADA2 Foundation worked with Dr. Cochino to translate the DADA2 Physicians brochure into Romanian to be distributed at the conference.
In addition, Dr. Lee was featured on the American College of Rheumatology podcast, providing an insightful overview of DADA2, its impact on patients, and approaches to symptom management. Don’t miss this engaging and informative discussion—it’s a must-listen! You can find the podcast on our website here.
Contribute to a Study of HSCT and DADA2
Dr. Isabelle Meyts, KU Leuven, Belgium, is one of the leading authorities on DADA2. She is working on a medical journal article that will be the most up-to-date information globally about bone marrow transplants in DADA2 patients.
If you have worked with DADA2 patients receiving HSCT, please consider contributing to Dr. Isabelle Meyts’ study. If you are a patient who has had or are considering a bone marrow transplant, we would love to hear from you so that Dr. Meyts could communicate with your doctor. She will not be collecting any personal information, but rather details such as the type of conditioning regimen, time to engraftment, etc. This study will help all DADA2 patients in the future who need a bone marrow transplant.
Please email info@dada2.org to participate. As you know, in rare disease research, collaboration is key!
Rare Disease Day 2025
Rare Disease Day 2025 is just around the corner on February 28th. It is the perfect opportunity to shine a spotlight on DADA2 and raise awareness! Let’s come together to educate others, advocate for patients, and celebrate our incredible community. Here are a few ways you can get involved:
- Share Your Story: Post about your journey with DADA2 on social media using #RareDiseaseDay and #DADA2. Personal stories make a powerful impact.
- Host a Local Event: Organize a gathering, talk, or fundraiser in your area to spread awareness and connect with others.
- Educate Peers: Share knowledge about DADA2 at grand rounds, medical conferences, or team meetings. Highlight its symptoms, diagnostic challenges, and management strategies.
- Use Social Media: Post about DADA2 on professional platforms like LinkedIn, X (Twitter), or Instagram. Share infographics, case studies, or links to reliable resources using hashtags like #RareDiseaseDay and #DADA2.
Reach out to us if you would like support in bringing your idea to life!
Featured Published Articles on DADA2
Intracellular concentration of ADA2 is a marker for monocyte differentiation and activation
Liang Dong et al, Frontiers of Medicine, 20 January 2025
Liang Dong et al, Frontiers of Medicine, 30 July 2025
Hu, N et al., Neurological Sciences, 11 January 2025
Muhammed D. Aksu et al, Turkish Journal of Hematology, January 20205
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