DADA2 Foundation

09/02/2026

Which will you choose? 10 years is a milestone we will mark for the rest of the year, and we need the help of every patient, physician, and researcher. When we share, more will know how to spot and treat the 34,000 undiagnosed DADA2 patients. Drop a comment on how you'll help! We'll follow up to support you.

09/01/2026

Our August newsletter is live with a nod to our 10th anniversary - a milestone we will mark for the rest of the year.

I’m not sure why we choose years like five, ten, or 25 to celebrate. After all, working at anything for any years-long span takes dedication. But today, we begin our 10th anniversary season that will last throughout the rest of 2026. After all, ten years ago this fall, we started the Foundation an...

08/31/2026

It's time for another DADA2Too! story! This time, Ellie Pritts.

Tell us: what makes you more than your diagnosis?? We'd love to feature it.

08/18/2026

Much has been shared about the incredible career of Dr. Dan Kastner, the co-discoverer of DADA2 who we lost this summer. Today, we remember Dan, the human scientist - the scientist who would go to the depths to understand a disease and the clinician who cared deeply about every patient. Take a moment to read Dr. Chip Chambers' tribute to Dr. Dan Kastner.

In loving memory Dr. Dan Kastner The Human Scientist By Chip Chambers, M.D. A moment that reflects what mattered most to Dan: the patients and families behind the science. 2018. Allow me to speak of Dr. Dan Kastner by his first name for a moment, because that is who Dan was: the human scientist. Acr...

08/13/2026

DADA2 ...or...DADA2TOO!!

Every patient has a story, and as we kick off our 10th anniversary, we're telling them. More than a diagnosis, these patients ALSO live full lives while navigating their disease.

Today, we feature Amber Whitmer. You'll just have to watch to see how she spends her days.

Do you want to tell your DADA2TOO!! story? Email us [email protected].

08/06/2026

just took a step up in India. Screening is available through the Vasculitis Society of Chandigarh. Himgiri Temple, Sector 1, Parwanoo. This is the kind of local connection that can lead to earlier diagnosis!

परवाणू के लोगों में दुर्लभ बीमारी डाडा2 की जांच करेगा पीजीआई

08/05/2026

We are still basking in the glow - pun intended, see pictures - of our first Day.

A quick wrap up reveals the results:

- 5 buildings and monuments proudly lit up in 3 countries in DADA2 colors

- A media hit in a hyper-local community to share one patient's 15+ year journey to diagnosis

- A nudge to finally start that Instagram account as a Foundation

- New donations from new donors

- Groups sharing content and translating it into new languages in Iran, North Macedonia, and other locations.

- Countless patients sharing their stories

- A Twitch broadcast dreamed up solely by one patient, reaching a whole different group of people

May this be an encouragement to you to take on the challenges your volunteers give you and collaborate to make them happen!

Many thanks to the RXR at the Helmsley Building in NYC, PECO for the PECO Building in Phila., FirstService Residential for the Symphony House in Phila., The Mersey Gateway for the Runcorn Bridge in the UK, and Main Roads Western Australia for the Boorloo Bridge in Perth.

08/04/2026

Shared from the Journal of Human Immunity on X:

In a new review on DADA2, Dr. Isabelle Meyts et al. cover the full spectrum of disease (vasculitis, bone marrow failure, immunodeficiency), TNF inhibitors, stem cell transplant, & on the horizon, the concept that a single variant can cause disease.

https://rupress.org/jhi/article/2/5/e20260015/282879/Adenosine-deaminase-type-2-deficiency-From-rare-to?utm_content=383662931&utm_medium=social&utm_source=twitter&hss_channel=tw-1879182048650264576

08/04/2026

Sharing your story can be challenging and it can be inspiring - two things can be true at once. Amber Whitmer, DADA2 patient in Florida, worked with a local news outlet to talk about her years-long quest to finally get a DADA2 diagnosis. We are grateful to Amber for sharing her story - hopefully it will help someone else identify symptoms, a physician spot patterns familiar to another patient, or generally increase awareness of rare disease.

On the first World DADA2 Awareness Day, 23-year-old Amber Whitmer shares how childhood symptoms, severe joint pain, a cane at 19, and NIH clinical trials reshaped her life as a college student.