MECP2 Duplication Foundation

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Tucson, AZ
MECP2 Duplication Foundation

The MECP2 Duplication Foundation is a family founded organization providing support to the MECP2 Duplication community.

10/12/2026

More new insights, more hope for the future!⁣
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We look forward to raising awareness for MECP2 Duplication Syndrome and presenting our co-authored research poster this week. ⁣
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10/11/2026

Great news! A Canadian site has been activated in the Ionis ATTUNE trial.
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The 12th site for the trial is now open in Vancouver at British Columbia Children’s Hospital. At this time, the only information we have is from the Health Canada registry (link in comments).
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Joining 8 sites in the U.S. and 3 sites in Europe, we will share any updates we receive about this site in the future! 💙

09/23/2026

We are conference-ready and cannot wait to see you! ⁣
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On Thursday evening from 6:30–8:00 pm, we will be gathering for a pre-conference family meet and greet at the Westin Houston Medical Center to kick off the weekend.⁣
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On Friday, breakfast and registration starts at 8:15 am with conference sessions starting at 9:00 am at the NRI building.⁣
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Questions? Message us. Safe travels and see you very soon!

09/07/2026

It’s almost time! In just a few weeks, we will gather in Houston. Make sure you’re conference ready:⁣
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✅ We’ve refreshed the conference mini-guide with the latest details at this link:
www.linktr.ee/mecp2d
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✅ If you haven’t signed up to attend yet, please register now so final preparations can be made!
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✅ Getting to town early? Join the early bird meet up! If you’re in Houston on Thursday, September 24th, come hang out with MECP2 Duplication Global at the Westin’s 2nd floor lobby anytime between 6:30-8 pm for a casual family gathering.⁣
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If you have any questions, please reach out. We are here to help, and we can’t wait to see everyone!

08/27/2026

If you’ve registered with Citizen Health, you can try Ari, a health companion tool with free premium access through the end of this year!⁣
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With back to school in full swing, Ari now has upgraded capabilities to support school needs, such as:⁣
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🎒Coordinating transportation⁣
🎒Early dismissal reminders⁣
🎒Checklist creation and monitoring ⁣
🎒Monitoring IEP draft changes & checking the plan checked against your child’s medical records⁣
🎒A meeting prep sheet you can take to the meeting & key emails to school (meeting, evaluation & records requests) drafted for you to review and send⁣
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Check out what Ari can do for you at the link in the comments!⁣
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08/26/2026

➡️ ➡️ Houston Conference Travel Alert ⁣
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Room block deadlines are fast approaching.⁣
Visit the link in the comments for more details, and reserve your hotel room before the expiration.⁣
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Have questions? We’re here to help. We can’t wait to see you in Houston!

08/08/2026

Houston, we are ready for liftoff! ⁣
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We’ve gathered everything you need into one convenient spot at the top link in the comments —and we can’t wait to connect with everyone next month!⁣
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08/06/2026

Your questions and ideas can shape the 2026 U.S. family conference and beyond! ⁣
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Check out the link in the comments to share what you want to learn more about:⁣
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• neurology/epilepsy⁣
• pulmonology/respiratory infections ⁣
• gastroenterology ⁣
• child development, milestones & behavior ⁣
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Clinical experts are gearing up to join us in Houston and would like to know what matters most to you. ⁣
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Even if you can’t attend the conference, we are planning to share after the event—so everyone is encouraged to submit potential topics!

08/03/2026

MECP2 Duplication Syndrome awareness month has just ended, but keep the advocacy going with our NEW awareness cards! ⁣
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You can download & personalize to print as business cards or full size at this link: linktr.ee/mecp2d Easiest on a computer, just swap out the name to customize them for your child(ren).
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Get yours today & educate medical professionals, family, friends, and the public about MECP2 Duplication Syndrome all year long!⁣
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08/02/2026

🎉 BIG NEWS 🎉⁣
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Families who have joined Citizen Health are invited to get early access to help test the upgraded AI Advocate!⁣
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Meet Ari.⁣ Ari is an AI health companion that doesn’t just answer your questions—but can take on the work for you: symptom tracking, appeals, spotting trends and more, as your proactive, human-like advocate ready to bring you relief.⁣
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The first 25 spots for the MECP2 duplication community are now available with free premium access through the end of the year.⁣
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A few things Ari can do to help take things off your plate:⁣
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📊 Symptom tracking⁣
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🛡️Appeal a denial⁣
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📅 Spot what’s coming⁣
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🔬 Read new labs⁣
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Ari is in early testing and access is invite-only at no cost. Citizen Health is building it with families like ours, and your feedback shapes what comes next—which is exactly why we wanted our community in early! ⁣
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Ari is built on the idea that your data belongs to you:⁣
✅ never sharing your data with third parties without your consent ⁣
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✅ always uses secure encrypted methods for any sensitive inputs, and more.
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If you already have a Citizen Health account, you will still need to sign up separately, but you will be able to link your previous account. If you haven’t joined Citizen and you’re in the U.S., get started at the link in the comments!
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Address

Tucson, AZ

Website

http://MECP2D.org/

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