ATRX Research Alliance

04/27/2026

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.

Jennifer and the ARA team

04/26/2026

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

04/03/2026

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.

04/03/2026

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.

04/02/2026

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.

03/02/2026

When we gather for this conference, something powerful will happen.

Families will connect.
Researchers will listen.
Momentum builds.

But I know that at times, travel costs can make attending feel out of reach.

That’s why we created Community Connection Grants, to help ensure that cost is not the reason someone misses being part of this community.

These grants will cover 3 nights at the Renaissance Columbus Downtown Hotel during the conference.

🗓 Applications close March 15
📩 Award letters sent March 20 (giving a full month to plan travel)

If attending has been on your heart, please apply.

We want you there. 💙

After completing your conference registration, apply for the grant here:
https://atrxresearch.org/2026-scientific-family-conference/

02/19/2026

✨ 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

02/19/2026

Happy Rare Disease Month!

02/18/2026

✨ Donate an optional blood sample to create valuable research resources for ATR-X Syndrome, including DNA and cell lines.
🩸 This simple step can have a big impact on global research. By providing your anonymous sample, you'll help qualified researchers unlock new insights. Prefer not to donate? You can still contribute by completing surveys and earn gift card rewards!

**Do you reside outside the US, but are interested in donating a sample? Please contact us! Though we do not have contracts with labs outside the US, we are willing to attempt to collect the blood sample if you are!

Contact info@atrxresearch.org and one of our ambassadors will assist you! Let your variant be represented in our research biobank!

02/15/2026

✨ Complete all assigned research surveys and add your voice to research that matters! Every survey you complete with Simons Searchlight helps researchers uncover new insights into ATR-X Syndrome, from development to behavior.
🧬📊 For specific surveys, Simons Searchlight provides you with individualized reports to show how your child compares to others with ATR-X Syndrome which can be shared with doctors and schools.
💙 BONUS: Receive gift cards for completing research surveys!
Are you a participant ready to complete this task? Go to http://bit.ly/Simons_Searchlight_Dashboard
*Not a Simons Searchlight participant? Sign up at http://www.SimonsSearchlight.org

02/28/2025

Today is Rare Disease Day.

According to some studies 300 Million people globally, nearly the population of the US, are affected by rare diseases. Those of us in this world know, however, that it often feels like you are alone in this fight.

We are thankful to Rebekah Tillotson, and the Institute of Genetics and Cancer for highlighting our condition on their blog and our mission for ATRX Research Alliance, working on advancing research into scientific knowledge and therapeutic treatments associated with this syndrome. We are also so very grateful to Professors Richard Gibbons, and Takahito Wada for all of their extraordinary work on this ultra rare condition.

You can read the blog post by clicking on the provided link below:

https://blogs.ed.ac.uk/institute-genetics-cancer/2025/02/27/spotlight-on-atr-x-syndrome-for-rare-disease-day-2025/


If you have a family member who has ATRX, consider donating samples to continue driving the research forward. -Donation link is in the comments

If not and you feel called, consider donating to ARA to help continue moving the science forward. There are many conditions and communities to support on this very important day of advocacy, if you choose ours, we'd be grateful.

Want to join the team, reach out! info@atrxresearch.org

With appreciation,

ARA









https://blogs.ed.ac.uk/institute-genetics-cancer/2025/02/27/spotlight-on-atr-x-syndrome-for-rare-disease-day-2025/

https://atrxresearch.org/

https://give.rarevillage.org/give/448928/ #!/donation/checkout

With Ben Harris and Jennifer Martinez-Harris, ATRX Research Alliance (a parent-led global group of families committed to accelerating research)

02/28/2025

Today is Rare Disease Day.

According to some studies 300 Million people globally, nearly the population of the US, are affected by rare diseases. Those of us in this world know, however, that it often feels like you are alone in this fight.

We are thankful to Rebekah Tillotson, and the Institute of Genetics and Cancer for highlighting our condition on their blog and our mission for ATRX Research Alliance, working on advancing research into scientific knowledge and therapeutic treatments associated with this syndrome. We are also so very grateful to Professors Richard Gibbons, and Takahito Wada for all of their extraordinary work on this ultra rare condition.

You can read the blog post by clicking on the provided link below.
https://blogs.ed.ac.uk/institute-genetics-cancer/2025/02/27/spotlight-on-atr-x-syndrome-for-rare-disease-day-2025/

If you have a family member who has ATRX, consider donating samples to continue driving the research forward.

If not and you feel called, consider donating to ARA to help continue moving the science forward. There are many conditions and communities to support on this very important day of advocacy, if you choose ours, we'd be grateful.

Want to join the team, reach out! info@atrxresearch.org

With appreciation,

ARA









https://blogs.ed.ac.uk/institute-genetics-cancer/2025/02/27/spotlight-on-atr-x-syndrome-for-rare-disease-day-2025/

https://atrxresearch.org/

https://give.rarevillage.org/give/448928/ #!/donation/checkout

With Ben Harris and Jennifer Martinez-Harris, ATRX Research Alliance (a parent-led global group of families committed to accelerating research)