Our Journey

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.

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.

Secure necessary partnerships to initiate research.

Determine detailed timelines and funding needs.

Secure necessary funding through fundraising activities.

Complete research activities.

Complete 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

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: Video call with Prof. Booth from GOSH in London about the International XIAP (XLP2) Gene Therapy Consortium that established this September, together with Dr. Marsh from Cincinnati and a team in Germany.