Our Journey

Keeping you updated on every step of our journey towards XLP2 gene therapy

January 2025: Adam's XLP2 diagnosis confirmed by Mayo Clinic

February 2025: 1st visit at Mayo Clinic as an XLP2 patient. Mild IBD medication prescribed.

April 2025: Appointment with Dr. Marsh at Cincinnati Children's Hospital confirms the current treatment approach.

August 2025: Virtual appointment with Dr. Booth from GOSH hospital in London. Gene therapy for XLP2 confirmed to be "at least 5 years away".

October 2025: Stronger IBD medication proved ineffective for XLP2.

November 1, 2025: Parents Against XLP2 established by Baca family.

November 8, 2025: Connection with UK-based XLP Research Trust established.

July 2025: Gene therapy for XLP2 patients opportunities and Dr. Booth as a leading expert suggested by ChatGPT.

Establish a connection with SLC6A1Connect.org to learn from their journey to successful gene therapy trials in 2025.

November 9, 2025: Established connection with XLP2-relevant social media group.

Secure necessary partnerships to initiate research.

Determine detailed timelines and funding needs.

Secure necessary funding through fundraising activities.

Initiate research activities.

Initiate clinical trials.

Obtain regulatory approvals.

Last update: November 2025

Treatment rollout.

May 2025: XLP2 symptoms worsened significantly. Mild IBD medication proved ineffective for XLP2.

June 2025: Temporary relief thanks to antibiotics. Stronger IBD medication prescribed.

XLP2-free future