ATRX Research Alliance

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

02/12/2026

Dear all,
We are very happy with how the organization and registration of our ATRX scientific conference is progressing!
We have already confirmed numerous scientists, a number of families attending in person and many others following the event virtually around the world.

This is a UNIQUE opportunity for scientists and families to strengthen our ties and continue to advance in the search for answers and alternatives that improve the lives of our children.
We are waiting for you all with open arms. We have a wonderful venue for those who want to get to Columbus, Ohio, and for those who want to follow us from home!
Key Information:
Dates: April 22–24, 2026
Place: Columbus, Ohio
Register and learn more:
[https://atrxresearch.org/2026-scientific-family-conference/](https://atrxresearch.org/2026-scientific-family.../...)

02/11/2026

✨ Join Simons Searchlight, a trusted research partner funded by the Simons Foundation, and help us learn more about ATR-X Syndrome. 🔬 By sharing insights on genetics, development, and more, you’ll become part of a secure, supportive community where families worldwide collaborate to drive discoveries and bring hope for future treatments. 🧬💙
Your anonymous self-reported survey data is shared with approved researchers to support their projects and publications, helping accelerate the development of better therapies for rare neurodevelopmental genetic disorders. 💸 BONUS: Receive gift cards for completing research surveys!
🌍 Participation is available in Dutch, English, French, Spanish, German, Italian and Portuguese. Register today at http://www.SimonsSearchlight.org.
Empower yourself with knowledge and connect with a global research community—your journey helps drive discovery.

02/11/2026

We are happy to support and collaborate with CVI Now! If you have a child with CVI, they are a great resource for you!

01/27/2026

in honor of Rare Disease month, every year we join the "Shine your Searchlight" campaign to give us all a reminder to log in and update our registry profile. This longitudinal study is so easy to access because you can do it from the comfort of your home.

The more we contribute, the more we learn about the condition. Are you ready?!

We’re excited to kick off the 4th annual ✨ campaign this February with 27 patient advocacy organizations!

This , we’re shining a light on rare genetic neurodevelopmental conditions—and the community driving research forward. 🧬

Your experience matters. Through research participation, families, caregivers, and individuals help build knowledge that leads to greater understanding and impact. 💙

Learn more about this great collaborative campaign: https://www.simonssearchlight.org/2026/01/14/shine-your-searchlight-2026-campaign-kickoff

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)