June 2026 – DADA2 Awareness Day – July 31

 

It’s exciting when people catch on to a vision. That’s been the momentum behind the DADA2 Foundation – to capture the spirit of the researchers who discovered the disease and carry it forward to raise awareness of the disease, contribute to the work to treat and cure the disease, and support patients along the way.

 

This month, as we approach the 10th anniversary, there is a lot of momentum underway. From our first ever DADA2 Awareness Day to LinkedIn Groups created specifically for physicians and researchers, there’s somewhere to plug in.

 

I also want to express my continued gratitude to the researchers who continue to find new ways to understand DADA2. Read on for not just links to newly published papers, but for a glimpse of some dedicated, long-term inquiry into how DADA2 works in the body – particularly in a new approach with a mammalian model. Without this kind of dedication and investment, we would never get closer to a cure.

 

Wherever you are in the world, we are grateful for your engagement.

 

 

With much gratitude,

 

 

 

 

Chip Chambers, M.D., Founder & President, DADA2 Foundation

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DADA2 Awareness Day: July 31, 2026
What Role Will You Play?

There are few stronger forces than a rare disease parent. Meet Tiarn and Ben.

Tiarn and Ben navigated their son Ruben’s DADA2 diagnosis alongside their local medical experts who assessed that, in addition to treating his DADA2, Ruben needed a bone marrow transplant (BMT). Like so many physicians, a DADA2 diagnosis was an ultra-rare one in their community. In fact, we only know of less than ten DADA2 patients in Australia. Despite every best effort, Ruben sadly passed away from complications of his BMT.

When the initial grief settled – though it will never go away – Tiarn and Ben mustered that same energy they put into navigating Ruben’s disease and are now channeling it into raising awareness for DADA2.

And so, on July 31, 2026, we will celebrate our first DADA2 Awareness Day thanks to Tiarn and Ben’s initiative alongside their own awareness campaign Roll Up For Ruben (which advocates for getting into the work and donating blood for patients). We invite you to join in honor of every brave DADA2 patient and family member who is working to ensure more physicians know about how to recognize, diagnose, and treat this disease. Here’s how to join the work:

• Share this graphic – made by Tiarn – on your social media and/or via email or text with friends between today and July 31. You can add your story to the text of the post. Our social media channels will also have ways to add an image to your Facebook profile picture.
• Request that monuments and bridges in your local community light up for awareness. Email us and we will help you identify landmarks in your local community that can be lit up.
• For members of the DADA2 Friends & Family page, resources are available there for you, as well as ideas from fellow patients and families to honor this day.

Let us know if you have other ideas! Email us at info@dada2.org. We will have resources available to help you.

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Right Click Below to Download

 

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Launched: Physician & Researcher LinkedIn page

Connection is a driving force of the Foundation. We have launched a specific group for physicians and researchers to discuss DADA2 topics. We invite all physicians and researchers to join the group and start the discussion – first by telling us where you are from and then by starting with questions, comments, sharing research, and ideas. It will take all of us to make it an active community!