Newsletter Archives

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…

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