Understanding and treating rare conditions like Monoamine Oxidase Deficiency (MAOD) isn’t just about science—it’s about people, families, and communities coming together for a common goal. You don’t need a science background to make a difference. This is something everyone can do to help!
Our foundation’s research is focused on developing gene replacement therapy, which aims to provide patients with a healthy copy of the MAO-A gene to replace the non-functioning one. Since we began in 2022, we’ve made exciting progress. Our work suggests that this therapy has the potential to reduce or even prevent the symptoms of MAO-A and MAO-A/B deficiencies. While there’s still a long road ahead, we remain hopeful, and we can’t do it without you.
Here’s how you can help: to create effective treatments like gene therapy, we first need to gather detailed information about how MAOD affects individuals over time. This information, called natural history data, is critical for designing future clinical trials. Families like yours are the key to collecting this data.
That’s why we’re proud to partner with Simons Searchlight, a world leader in rare genetic and neurodevelopmental research. Simons Searchlight has created secure, easy-to-use online surveys designed for families like yours. By completing these surveys and sharing your experiences, you’ll provide invaluable insights that help researchers better understand MAOD and move us closer to life-changing treatments.
Participating is simple, safe, and completely anonymous. Simons Searchlight uses advanced security measures to protect your family’s information. By joining this effort, you’ll be contributing to groundbreaking research and helping build a brighter future for everyone affected by MAOD.
Ready to get started? Click the link below to create your account and begin sharing your family’s story: https://research.simonssearchlight.org/account/create
If you have any questions or need assistance, please visit our Contact Us page, we’re here to help. Together, as a united MAOD community, we can drive this research forward and bring hope to families everywhere.
Thank you for being part of this important journey!