ATRX Research Alliance

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

02/14/2026

✨ Your medical history helps researchers understand ATR-X Syndrome and develop better therapies. 🩺 Simons Searchlight's secure platform allows families worldwide to contribute to this important work. Your anonymous survey responses are shared securely with researchers at no cost, and reviewed by a genetic counselor if needed.
🌟 We'll share research updates with your community through quarterly data reports and will check in yearly to keep your information up-to-date. 💙 BONUS: Get 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

02/14/2026

✨ Sharing your genetic lab report is an important step in helping researchers study ATR-X Syndrome. 🧬🔍 Can’t find it? The Simons Searchlight team is here to help you find this information and have resources on this FAQ page: https://bit.ly/Genetics_Lab_Report_FAQ
Together, we can strengthen our understanding and support our ever-growing community.
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)