Newsletter Archives

dada2 newsletter april

APRIL 2024: Collaboration is Key

I’ll keep my intro this month short and sweet: Collaboration is Key. Below are a number of updates that illustrate this long known truth that we know changes lives.

In particular, I want to emphasize the incredibly important role that physicians play in collaboration today and especially in the future. It is YOUR interactions with patients that will help fuel the next wave of discovery for DADA2.

2024 February DADA2 Newsletter_page-0001

February 2024: Take Action to Honor our Journeys on Rare Disease Day

Dear DADA2 Community:

It is Rare Disease Day next week. This is THE time to honor each of our journeys – hard fought and challenging, but unique and inspiring!

JANUARY Cheers to New Beginnings

January 2024: Cheers to New Beginnings!

Dear DADA2 Community, Welcome to this new year! As I mentioned at the end of last year, 2024 will be momentous. We have so much in the works that we are excited to share in due time. For now, I want to say thank you to every one of you who donated to the DADA2…

DECEMBER 2023 - Advancing Our Understanding

December 2023: Advancing Our Understanding!

Dear DADA2 Community,

This may well be the most intellectually stimulating, time consuming, and absolutely fascinating newsletter we may ever send – that is, until the physicians and researchers meet again in 2025 for the 5th International Conference on DADA2.

November DADA2 Conference Recap

November 2023: DADA2 Conference Recap

Dear DADA2 Community,

What happens when you get nearly 100 scientists and clinicians in a room for 36 hours to share their latest findings and questions on DADA2?

Well, you get 30+ talks updating on the science and clinical news. You get 10+ posters that generate hours of discussion among scientists and doctors alike. You get side conversations and pages of notes and agreements to follow up, join efforts, and continue to pursue treatments and a cure.

DADA2 February 2023 Newsletter

February 2023: Rare Disease Day

Highlights of this month’s newsletter include:

  • What Can You Do to Celebrate Rare Disease Day?
  • Patient Registry Sneak Peek
  • Feature on DADA2 Patient, Andy Grundstad
  • Global Reach: Who’s Engaged in DADA2?
DADA2 January 2023 Newsletter

January 2023: New Year of Discoveries & Collaboration

Highlights of this month’s newsletter include:

  • The DADA2 Foundation is Grateful for Your Support
  • Mutations and What Do They Mean?
  • Patient Update: Adela Wee
DADA2 December 2022 Newsletter

December 2022: End of Year

Highlights of this month’s newsletter include:

  • 2022 Year-End Recap
  • 4th International Conference on DADA2 planned for 2023
DADA2 November 2022 Newsletter

November 2022: DADA2 in Twins

Highlights of this month’s newsletter include:

  • Identical Twins with DADA2: Anna Maria Beretta and Veronica Beretta
  • Reminders for 2023 – Patient Registry, Conference, and New Website
  • What Will You Do With Your DADA2 Story?
DADA2 October 2022 Newsletter

October 2022: Global Updates

Highlights of this month’s newsletter include:

  • Global Team Continues to Work on Consensus Statement
  • Saudi Arabian Cohort: Study by Pediatric Hematologist, Dr. Fahad Alabbas
  • What happens when a lifelong dream collides with your own diagnosis of DADA2?
DADA2 August 2022 Newsletter

August 2022: CZI Cohort Gathering

Highlights of this month’s newsletter include:

  • CZI Cohort Gathering
  • Gene Therapy Progress
  • DADA2 Family rallies local high school to raise funds with bake sale
DADA2 April 2022 Newsletter

April 2022: Staff Highlights

Highlights of this month’s newsletter include:

  • Meet Julie Williams, Genetic Counselor who will develop the DADA2 Patient Registry
  • Meet Dr. Pui Lee, DADA2 physician and researcher at Boston Children’s Hosptial
  • Meet Dr. Amanda Ombrello, DADA2 physician and researcher at the National Institutes of Health, Washington, DC
  • Where in the world is DADA2 being studied?
DADA2 February 2022 Newsletter

February 2022: Rare Disease Day

Highlights of this month’s newsletter include:

  • DADA2 Foundation Founder Dr. Chip Chambers will be the keynote speaker at the Nationwide Children’s Hospital virtual event
  • Join us to raise awareness on Rare Disease Day 2022
DADA2 December 2021 Newsletter

December 2021: ​Natural History Study ​and Patient Registry

Highlights of this month’s newsletter include:

  • DADA2 Foundation’s Natural History Study (NHS) and Patient Registry (PR)
  • Dr. Dan Kastner and Dr. Pui Lee provide insight on the importance of natural history studies
  • What Patients Need to Know… about The Natural History Study & Patient Registry
DADA2 November 2021 Newsletter

November 2021: First-Ever DADA2 Foundation Momentum Report

Highlights of this month’s newsletter include:

  • Momentum Report Highlights
  • A Note From Our Founder, Chip Chambers, M.D.
  • Supporting Each Other: Private Facebook Families & Friends Page
DADA2 October 2021 Newsletter image

October 2021: Research Round Up

Highlights of this month’s newsletter include:

  • Gene Therapy Research, Alessandra Mortellaro, Ph.D.
  • Hematopoietic Stem Cell Transplant, Hasan K. Hashem, M.D.
DADA2 June 2021 Newsletter image

June 2021: Consensus Kickoff

Highlights of this month’s newsletter include:

  • Consensus Committee gathers to discuss the critical milestone of writing a consensus statement
  • Family Spotlight: Anna Maria Beretta
DADA2 April 2021 Newsletter image

April 2021: Driving Towards Consensus

Highlights of this month’s newsletter include:

  • Patient & Family Gathering Planned
  • Clinician Spotlight: Dr. Ombrello
  • Family Spotlight: The Puzio Family
  • Nashville, TN joins other US cities to light up monuments for Rare Disease Day
DADA2 February 2021 Newsletter

February 2021: Inaugural Newsletter

Highlights of this month’s newsletter include:

  • Rare Disease Day 2021
  • Researcher Spotlight: Dr. Pui Lee
  • Patient Spotlight: Ishaan Jeloka
  • Dr. Dan Kastner (who discovered DADA2) receives prestigious Crafoord Prize from the Royal Swedish Academy of Sciences