ATRX Research Alliance

As we close out an incredible conference, my heart is so full.

On behalf of our organization, ATRX Research Alliance, and as a fellow ATRX parent, I want to extend our deepest gratitude to the researchers who shared their work, their time, and their passion with our community:

Dr. Richard Gibbons
Dr. David Picketts
Dr. Allison Baker Bradbury
Dr. Rebekah Tillotson
Jack Seminetta, PhD Graduate Student

Your dedication is what moves this field forward and gives families like ours real hope for the future.

We are also so thankful for all of our presenters, partner organizations ( ATR-X Foundation , ATRX Italia, Asociación ATR-x España, ATRX Syndroom Nederland, Simons Searchlight), and collaborators who helped make this conference meaningful, informative, and deeply connected. It truly takes a community to drive progress, and we are grateful to be in this alongside all of you. Thank you to Drs. Marloes van Gastel and Alessandro Vaisfeld for your hands-on work with the ATRX community!

To our families - a special thank you. Thank you for showing up, for sharing your stories, for asking questions, and for supporting one another. This space is as powerful as it is because of you.

As a parent, this work is personal. As an organization, it is our mission to continue building momentum by supporting research, fostering collaboration, and working toward treatments that will improve quality of life for our children and loved ones.
We ask that all of you who attended, in person or virtually, please take a moment to provide us feedback so that we can continue to address the work you find most important. The feedback survey is here:https://forms.gle/WWK8SUxrVffMhdtZ8.

This conference is a stepping stone as we prepare to begin fundraising for our research grant to continue to drive this forward. None of this would be possible without this community. If you did find value in this week or want to help us drive toward the future of research, please spread the word about ATRX Research Alliance. If you feel called to and are able to donate, your donations 100% go toward scientific research. If you are not able to donate, you can still help by sharing that donation link with your friends, family, and network.

Thank you for being part of this journey with us.

The ARA team

We’re almost there and the excitement is building!

This year’s conference brings together a global community of families, researchers, and members of industry, all united in advancing support and progress for the ATR-X community.
If you’ve been thinking about joining us, there’s still time. We would love to have you in the room for these meaningful conversations and connections.
Register now and be part of something really special.

✨ Your annual updates to Simons Searchlight help researchers understand how ATR-X Syndrome evolves over time, benefiting families like yours. 📊 We regularly add new surveys to the study, and some are repeated each year, including a follow-up medical history survey. By sharing your journey annually, you support future research and inspire hope in others.
🌟 We encourage you to continue your journey with Simons Searchlight and join our growing community. Together, we can uncover new insights and foster hope for the future.
Visit your dashboard to share updates and complete surveys: http://bit.ly/Simons_Searchlight_Dashboard