Newsletter Archives

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?

Download newsletter as originally published here.

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

Download newsletter as originally published here.

December 2022: End of Year

Highlights of this month’s newsletter include:

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

Download newsletter as originally published here.

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?

Download newsletter as originally published here.

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?

Download newsletter as originally published here.

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

Download newsletter as originally published here.

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?

Download newsletter as originally published here.

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

Download newsletter as originally published here.

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

Download newsletter as originally published here.

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

Download newsletter as originally published here.

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.

Download newsletter as originally published here.

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

Download newsletter as originally published here.

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

Download newsletter as originally published here.

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

Download newsletter as originally published here.