At the Monoamine Oxidase Deficiency Foundation (MAODF), our mission goes beyond helping a single child—our goal is to support every family affected by monoamine oxidase A (MAO-A) deficiency or combined MAO A/B deficiency. To achieve this, we are working to build an inclusive and supportive community while advancing research efforts to bring effective treatments to reality.
Since our founding in 2022, we’ve made significant progress toward developing a gene replacement therapy for MAOD. This innovative treatment aims to replace non-functioning MAO-A genes with healthy ones, potentially reducing or even preventing the symptoms caused by MAO-A mutations or MAO A/B gene deletions. While much work lies ahead, we are filled with hope that these efforts will lead to life-changing breakthroughs.
However, medical advances require more than just scientific research—they also depend on collaboration with families and communities. Collecting natural history data from families affected by MAOD is essential to designing effective clinical trials and accelerating the development of new treatments.
To this end, MAODF is committed to engaging families worldwide through platforms like Facebook, Simons Searchlight, our foundation’s website, and events such as Rare Disease Day. These outreach efforts aim to raise awareness, foster a supportive community, and connect with as many MAOD-affected families as possible.
Together, we can advance research, build connections, and bring hope to families impacted by MAOD. Join us in making this vision a reality!
How We’re Reaching Out:
a) Connect with us on Social Media
Our Facebook and Instagram pages are key resources for raising awareness about MAOD and to help others better understand this rare condition. Please like and follow to receive research updates, educational content, and community news. By increasing awareness, we aim to grow advocacy and donations to support research and treatment development.
We also have a public Facebook group to help foster engagement, enabling the MAOD community to connect with a wider audience of allies, friends, and supporters. Visitors can ask questions, which we address publicly so everyone benefits from shared knowledge.
Facebook page: Monoamine Oxidase Deficiency Foundation – MAODF
https://www.facebook.com/people/Monoamine-Oxidase-Deficiency-Foundation-MAODF/61583446606077/
Instagram page: @MAODFoundation
https://www.instagram.com/MaodFoundation/
Facebook group: Monoamine Oxidase Deficiency Foundation
https://www.facebook.com/groups/monoamineoxidasedeficiencies
b) Public Facebook
Our public Facebook page is a key resource for raising awareness about MAOD. We share research updates, educational content, and community news to help others better understand this rare condition. This platform also fosters engagement, enabling the MAOD community to connect with a wider audience of allies, friends, and supporters. By increasing awareness, we aim to grow advocacy and donations to support research and treatment development. Visitors can ask questions, which we address publicly so everyone benefits from shared knowledge.
The link to the Facebook page is:
https://www.facebook.com/groups/monoamineoxidasedeficiencies
c) Private Parent Facebook Group
For parents of children affected by MAOD, we offer a private Facebook group where they can connect, share experiences, and find support. This trusted space provides access to the latest updates on MAODF initiatives, research developments, and upcoming events. Together, parents can empower one another as part of a united community working toward treatments and a cure. To join this group, please email us, and we’ll guide you through the process.
d) Simons Searchlight
MAODF partners with Simons Searchlight, a leading organization in rare genetic research, to collect clinical data essential for understanding MAOD. By participating, families contribute vital information about their child’s developmental history, such as milestones in walking, talking, or eating. For example, if the average age of eating solid food is 3.5 years for children with MAO A/B deficiency, clinical trials can use this data to measure the success of a therapy—e.g., earlier achievement of that milestone with treatment.
Simons Searchlight ensures all data is kept confidential through strict privacy measures. This information is critical for designing clinical trials and moving closer to effective treatments. Your participation matters, it’s through these collective efforts that we can create meaningful change.
e) MAODF Website
Our website is the central hub for information about MAOD. Families can find resources, research updates, and ways to get involved. The “Contact Us” page offers an easy way to connect directly with the foundation. Through the website, we strive to educate, inspire, and support the MAOD community while driving research that leads to brighter futures.
f) Rare Disease Day
Observed each year on February 28 (or 29 in leap years), Rare Disease Day shines a spotlight on rare conditions like MAOD. As part of this global movement, MAODF raises awareness and funds while sharing hope for those affected. The zebra, known for its unique stripes, represents rare diseases, and we proudly join this community to advocate for research and treatment development. Participation in Rare Disease Day is a vital step toward increasing understanding and securing the resources needed to make a difference.