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: Escalation to stronger IBD therapy demonstrated limited efficacy in XLP2 for Adam.

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.

November 14, 2025: Established 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.

December 2025: Secured necessary partnerships to support relevant XLP2 gene therapy research.

In Progress: Determine detailed timelines and secure necessary funding.

Complete research activities.

Complete clinical trials.

Obtain regulatory approvals.

Last update: January 2026

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

November 20, 2025: Gained non-profit status through fiscal sponsorship of Rare Village Foundation.

November 22, 2025: Official Parents Against XLP2 kickoff call with other impacted families.

November 30, 2025: Participated in a video call with Prof. Booth (GOSH, London) to discuss her work on gene therapy approaches for XLP2.