Newsletter Articles


A donor story

September 2026

A once-anonymous donor is now a permanent part of our lives, celebrating love, family, and the future he made possible.


Meet Etta

August 2026

It’s difficult to wallow when Etta bursts into the room with her infectious giggle and Jack Sparrow run.


Grandmother Julie and Benny

July 2026

There is every reason to believe that brighter days are ahead



Meet Myles ZAP 70 Deficiency SCID

June 2026

After being given less than a 5% chance at life, I did not want to waste my second chance.


Meet Rafhaela Artemis SCID

May 2026

For Spring Break 2026, Rafhaela, an Artemis SCID patient, choose to serve on a mission trip to an area of North Carolina still experiencing the after effects of a damaging hurricane.


Alex & Austin

April 2026

While Alex’s journey involved significant challenges, Austin’s experience with SCID was very different — yet both paths shaped who they are today.



Ligase IV with SCID

March 2026

Even when plans change abruptly and painfully, compassion and connection can still grow.


Jake & Tyler XSCId

February 2026

To save his life, Jake needed a bone marrow transplant. As a 50-50 match to my son, I was able to be his donor.


January Newsletter Meet the Nachem family

January 2026

I alone went to sit with the doctors at the morning conference, and I spoke to those who came through during rounds, and also dealt with doctors who weren’t on site via phone, email, and text.