JULY 2024: The power of a Network
Dear DADA2 Community:
The communities we build around us are powerful. This month, we’re sharing stories about how we’ve come together as a community to make life better for patients through research, as well as quick and thorough clinical care. I would also love to hear your thoughts on what we should highlight in future newsletters or on social media that furthers our mission to convene, collaborate and communicate to find a cure.
Now for a quick organizational update. It is with truly mixed emotion that I announce the DADA2 Foundation will be bidding farewell to Kristen Hayner as she moves on to a new career opportunity. Kristen has been working with the Foundation since 2019, when I sought her expertise in better communicating the mission and work of the Foundation. With her help, we have expanded our global network of patients, family members, physicians and researchers. She steered the Foundation through the quick transition to virtual conferences when the pandemic shut the world down. She was instrumental in overhauling our outdated website into an accessible, deep resource for patients, family, physicians and researchers. She stepped out of her communications wheelhouse to oversee our fundraising efforts, raising thousands of dollars. And she has done all of this with a sense of humor, unflappable grace when asked to pivot at a moment’s notice, and, most of all, a commitment to the core mission of the DADA2 Foundation: improving the lives of DADA2 patients across the globe. We will miss Kristen but know that her work has created a solid base from which we will continue to grow. And we wish her all the best in her new job!
Thank you for all you do!
Cheers,
Chip Chambers, M.D.
Founder & President, DADA2 Foundation
Highlighting Research: What News Do You Have?
This community is never short on publishing research. And we do our best to include what we find at the end of these newsletters.
But we’re curious: what are you working on that’s either not yet published or that we could highlight and share a story on?
Oftentimes, patients need more explanation about the cutting edge research and clinical developments that researchers do. This is a chance to help the whole community come together and understand the impact of the work.
Email us with the button below to tell us about your work and we’ll be in touch about ways we can help spread the word!
Our Network, Supporting Practicing Physicians
Recently, the DADA2 Foundation activated our global network of expert clinicians to help one young patient in Ireland who had developed antibodies to his current anti-TNF treatment!
The patient, Oscar, was asymptomatic, but his mother, Edyta, wanted to make sure that meant his medication was working. She reached out to the Foundation for help interpreting Oscar’s bloodwork results, which showed both low ADA2 level and antibodies to his current TNF inhibitor.
The Foundation connected a U.S. expert clinician to Oscar’s physician and, with a quick 30-minute call, they determined Oscar needed to change to a new TNF inhibitor. This is critical to prevent possible strokes since his ADA2 level was low!
We are thrilled when we can help patients connect with the resources they need, and we are always here to help advise physicians who are new to DADA2 about this disease.
Patients: YOU ANSWERED THE CALL
Thanks to each of you, we helped researcher Isabelle Meyts, M.D., Ph.D., and colleagues Giorgia Bucciol and Lotte Vanhye of Belgium, reach a strong number of patient participation in the quality of life survey. This is truly a needed set of data to help better understand the disease!
Dr. Meyts is still working through all the results, but early indications show elements of life quality that should certainly be explored. Elements of life like general and cognitive fatigue are showing correlations. As Dr. Meyts says, “This information is very important and needs to be taken into account in optimizing therapeutic approaches.”
If you did not submit a response and would like to, there is still time!
Latest Published Articles on DADA2
16 Bone marrow damage in patients with Adenosine Deaminase 2 Deficiency
Clinical Immunology, Volume 262, Supplement, 2024.
May 2024. Clinical Immunology 262:110114.
Artist Contest from EveryLife Foundation
Everyone has a story to tell, and some of us are creative! Check out this annual contest from the EveryLife Foundation – focused on honoring the visual art or poetry talents of anyone touched by a rare disease. The winners will be coached and have their art displayed at various conferences throughout the year, as well as have the opportunity to speak at Rare Disease Week on Capitol Hill.
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