Our Mission

How We Achieve Our Mission

We pursue our mission through a focused, actionable strategy.

2. Get the Experts on Board

Build a coalition of clinicians, immunologists, geneticists, and researchers committed to defeating XLP2.

3. Secure Resources

Drive targeted fundraising campaign that directly supports XLP2 research, clinical trials, and development of targeted gene therapy.

1. Coordinate Families

Connect families around the world who are affected by XLP2.

4. Advocate

Advocate for expanded newborn screening, better diagnostic tools, and improved standards of care.

What Drives Us

We are the parents of Adam, our two-year-old son who was diagnosed with XLP2 at just one year old after months of unexplained gastrointestinal issues. Since then, we’ve searched tirelessly for answers - meeting specialists at the Mayo Clinic, Cincinnati Children’s Hospital, and even Great Ormond Street Hospital in London.

After a year of treatments that don’t specifically target XLP2, we realized that the best hope for Adam and other children with XLP2 - short of a high-risk bone-marrow transplant - is advancing gene-therapy research focused on the XLP2 mutation. Although several teams worldwide are exploring this approach, a viable therapy is still at least 5 years away. For many children, including Adam, five years is simply too long to wait.

That’s why we created Parents Against XLP2 to connect affected families, accelerate research, raise awareness, and help bring gene therapy to children like Adam as soon as possible.

We hope you’ll join us in this urgent mission.

Thank you,
Jan & Kristyna Baca