DADA2 Foundation

04/15/2026

This week, the NIH is hosting a symposium to honor the work of Dr. Dan Kastner, M.D., Ph.D., who has served as the Scientific Director of the National Human Genome Research Institute. Most importantly to this community, he is the researcher who discovered DADA2 in the United States, and has hosted each DADA2 Foundation Conference since the beginning. As part of the recognition, the host group is accepting tributes to Dr. Kastner’s work. We invite you to share your thoughts, comments, photos and/or any other memories of how Dr. Kastner has impacted your life. Please do so here by Sunday, April 19:

Contributors close Abdul Alrasheed contributed a message Adam Phillippy contributed a top 5 list Adriana A. De Jesus contributed a message Ahmet Gül contributed a picture Ahmet Gül contributed a picture Ariane Soldatos contributed a message Balu Athreya contributed a essay Cecilia Poli contributed...

04/08/2026

DADA2 awareness is top of mind today for a whole new audience of people who may never have known about the life of families living with a rare disease. Named the "charity of the game", The DADA2 Foundation will be featured at a lacrosse game between Vassar and their rival. It's all the idea of Tess Billings, whose family navigates multiple DADA2 diagnoses. Let's cheer on Tess and her team to victory and hope that more people learn how they can support!

03/18/2026

Raising awareness is so important to the work of treating and curing rare diseases - and it is so brave. Join us around the globe in watching a new documentary - Defying Rare Disease on CNBC with Becky Quick whose own child is navigating a diagnosis. In the piece, she highlights the stories of families who are chasing cures for their children. International viewing times and media platforms are listed here:

Hosted by Becky Quick, “CNBC Cures: Defying Rare Disease,” spotlights the families dealing with rare diseases and the scientists, advocates, and innovators fighting to change their futures.

03/05/2026

We are just about $500 away from reaching our Rare Disease Day fundraising goal. Will you help us top out the thermometer? https://secure.qgiv.com/event/dada2rdd2026/?blm_aid=21226

02/28/2026

Our latest newsletter celebrates the journeys of DADA2 patients, and the advocacy they have taken on to support fellow patients. We also share our gratitude for the increasing awareness of the disease as well as new access to diagnosis and further lines of inquiry by labs around the world.

We are honored to convene this community as we collaborate to find a cure. And, we need your support for our mission! We surpassed our fundraising goal thanks to the efforts of patients sharing their stories with friends and those friends investing in the work.

But there's still time to extend that reach so that we can gather even more patients, bring researchers together to discuss new avenues of discovery, and resource physicians with information they need to identify and treat this rare disease.

Read more and help us extend our goal!

February 28 is Rare Disease Day. It’s a day that we honor – globally – the bravery, persistence, and curiosity of everyone whose life is touched by a rare disease. DADA2 is fortunate to be one disease that is not a common diagnosis but is supported by a huge community of researchers around the...

02/27/2026

Thrilled to join fellow Nashville rare disease advocates last night at Rare Disease Day event to view a documentary through Too Rare to Care. It was a great time of connection and learning. Thanks to Potocsnak Center for Undiagnosed and Rare Diseases at Vanderbilt University Medical Center for hosting us with National Organization for Rare Disorders.

02/25/2026

Welcome to our friends from North Dakota who heard DADA2 Patient Andy Grundstad on 660 KEYZ News Radio this morning! We are eager for you to learn more and, if you feel you want to make an impact, make a gift in honor of Andy's and so many other patients' fight! We are a resource to each of them and to the physicians who treat them! https://secure.qgiv.com/event/dada2rdd2026/account/2247429/

02/23/2026

Nashville, Tennessee - home to the DADA2 Foundation - is raising awareness this week for

02/20/2026

Daily life with DADA2 – or any – can be a challenge. But it’s a little easier when you have more information and people who understand what you’re going through.

This past weekend, 20+ patients and family members gathered online from 8 countries around the globe, spending time with DADA2 Foundation Founder Dr. Chip Chambers and the staff, as well as Dr. Pui Lee, DADA2 Clinician at Boston Children’s Hospital.

This Rare Disease Month, please consider supporting the Foundation so that we can hold more of these important patient gatherings, and bring researchers together this year: www.dada2.org/donate

In the middle of busy lives, it was great to see so many faces of DADA2 patients and caregivers who found our community and now support one another in their daily life through email, texts, and other online groups. Highlights from the meeting coming in our next newsletter!

02/13/2026

We’re thrilled that the Give Kids a Chance Act is, once again, law in the U.S. You may remember we asked U.S. DADA2 families to contact their representatives to encourage re-authorization of the original bill, which expired in 2024. Thanks to this community and so many other rare disease advocates the bill is now law again.

The Act supports research and FDA-approval pathways for pediatric rare diseases. You can view the specifics in the actual bill at the link below. We know that, as we pursue a cure, these rules will help pave the way.

Many thanks to all who championed this legislation. It is a true celebration of the power of collaboration when it comes to pursuing treatments and cures - especially as we celebrate Rare Disease Month this February.

Actions on H.R.1262 - 119th Congress (2025-2026): Mikaela Naylon Give Kids a Chance Act