MECP2 Duplication Foundation

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

Houston, we are ready for liftoff! ⁣⁣We’ve gathered everything you need into one convenient spot at the top link in the ...
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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Your questions and ideas can shape the 2026 U.S. family conference and beyond! ⁣⁣Check out the link in the comments to s...
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!

MECP2 Duplication Syndrome awareness month has just ended, but keep the advocacy going with our NEW awareness cards! ⁣⁣Y...
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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🎉 BIG NEWS 🎉⁣⁣Families who have joined Citizen Health are invited to get early access to help test the upgraded AI Advoc...
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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We are stronger together! International patient organizations are now united under one umbrella as MECP2 Duplication Glo...
07/29/2026

We are stronger together! International patient organizations are now united under one umbrella as MECP2 Duplication Global (MDG). ⁣
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By coming together, we can accelerate research, improve care, and empower families affected by MECP2 Duplication Syndrome.⁣
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You can get involved:⁣
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✅ Watch our brand-new launch video⁣
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✅ Explore our new website to learn more ⁣
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✅ Share our message of advocacy across the globe⁣
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✅ Get involved by following our social media & joining our email list to stay informed with the latest updates on new research & opportunities ⁣
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One voice. One worldwide movement. We are MECP2 Duplication Global 🌎⁣
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🇯🇵 私たちは、つながることで、もっと強くなれる。⁣
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世界各国の患者団体が、MECP2 Duplication Global（MDG）というひとつのグローバルコミュニティのもとに集結しました。⁣
力を合わせることで、研究を加速させ、より良い医療につなげ、MECP2重複症候群患者とその家族を支えていきます。⁣
ぜひこの活動に参加してください。⁣
✅ 新しく公開された紹介動画を見る⁣
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✅ 新しいウェブサイトでMDGについて知る⁣
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✅ 私たちのメッセージを世界中に広める⁣
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✅ SNSをフォローし、メールリストに登録して、最新の研究や活動情報を受け取る⁣
ひとつの声が、世界をつなぐ。⁣
私たちは、MECP2 Duplication Globalです。🌍⁣
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🇩🇪 Gemeinsam sind wir stärker! Internationale Patientenorganisationen haben sich unter dem Dach von „MECP2 Duplication Global“ (MDG) zusammengeschlossen.⁣
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Durch diesen Zusammenschluss können wir die Forschung vorantreiben, die Versorgung verbessern und Familien unterstützen, die vom MECP2-Duplikationssyndrom betroffen sind.⁣
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So könnt ihr euch engagieren:⁣
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✅ Seht euch unser brandneues Start-Video an⁣
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✅ Entdeckt unsere neue Website und erfahrt mehr⁣
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✅ Verbreitet unsere Botschaft weltweit⁣
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✅ Macht mit: Folgt uns in den sozialen Medien und abonniert unseren E-Mail-Verteiler, um über aktuelle Forschungsergebnisse und neue Möglichkeiten auf dem Laufenden zu bleiben⁣
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Eine Stimme. Eine weltweite Bewegung. Wir sind MECP2 Duplication Global. 🌍⁣
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We have updated information on the Houston conference! ⁣⁣Check out the link in the comments to access the most current i...
07/29/2026

We have updated information on the Houston conference! ⁣
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Check out the link in the comments to access the most current information about registration, hotels, clinic visits, and travel assistance. ⁣
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If you have questions, please don’t hesitate to contact us—and we can’t wait to see you in Houston!⁣
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07/28/2026

Thrilled to partner with our global allies in the fight against MECP2 Duplication Syndrome!

https://wearemecp2dup.org/

Meet Braden Albert. He sparked a global movement.Braden’s mother, Pam, wanted to raise awareness after he was diagnosed ...
07/26/2026

Meet Braden Albert. He sparked a global movement.

Braden’s mother, Pam, wanted to raise awareness after he was diagnosed with MECP2 Duplication Syndrome and chose July to honor his birthday. She advocated for her Pennsylvania state representative to shine a light on the disease through a formal resolution marking July as MECP2 Duplication Syndrome Awareness Month

Since then, more families have championed recognition for July as MECP2 Duplication Syndrome Awareness Month in other states, such as Arizona, Michigan, and Georgia.

Every time we celebrate July in our community, it is anchored on Braden and his brother Noah, who was also diagnosed with MECP2 Duplication Syndrome. Their legacy lives on as the wave of awareness continues to spread around the world!

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Lernen Sie Braden Albert kennen. Er hat eine weltweite Bewegung ins Leben gerufen.

Bradens Mutter Pam wollte auf die Krankheit aufmerksam machen, nachdem bei ihm das MECP2-Duplikationssyndrom diagnostiziert worden war; für ihr Anliegen wählte sie den Monat Juli – passend zu Bradens Geburtstag. Sie setzte sich bei ihrem Abgeordneten im US-Bundesstaat Pennsylvania dafür ein, durch eine offizielle Resolution auf die Krankheit hinzuweisen und den Juli zum Monat des Bewusstseins für das MECP2-Duplikationssyndrom zu erklären.

Seitdem haben sich auch in anderen Bundesstaaten – wie etwa Arizona, Michigan und Georgia – weitere Familien dafür stark gemacht, den Juli als Monat des Bewusstseins für das MECP2-Duplikationssyndrom anerkennen zu lassen.

Wenn wir in unserer Gemeinschaft den Juli begehen, stehen Braden und sein Bruder Noah – bei dem ebenfalls das MECP2-Duplikationssyndrom diagnostiziert wurde – im Mittelpunkt. Ihr Vermächtnis lebt fort, während sich die Welle der Aufmerksamkeit immer weiter über die ganze Welt ausbreitet!

Symptoms often fall along several major categories in MECP2 Duplication Syndrome:⁣⁣• neurological: such as seizures and ...
07/24/2026

Symptoms often fall along several major categories in MECP2 Duplication Syndrome:⁣
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• neurological: such as seizures and dysautonomia⁣
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• developmental: global developmental delay/intellectual disability⁣
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• pulmonary: repeated respiratory infections⁣
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• gastrointestinal: constipation, reflux, difficulty chewing and swallowing⁣
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• musculoskeletal: scoliosis, hip dysplasia ⁣
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• immunological: decreased immune function, although new research open up questions on what is really happening⁣
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MECP2 Duplication Syndrome isn’t just one thing—it affects multiple symptoms and manifests differently, depending on the person. It is unclear how duplication size affects symptom severity, although studies have long shown that MECP2 triplication produces more serious symptoms. ⁣
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Recent work on the genetics of MECP2 duplication have begun to delineate and explore how different genetic arrangements (such as simple, complex, terminal, and translocation) are tied to symptom severity—with more information to come on genetics at the 2026 Family Conference in Houston this September!
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To get an even clearer picture of MECP2 Duplication Syndrome, researchers will need more information about genetic sub-types, which symptoms are most prevalent, and how symptoms develop and change over time. ⁣
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The effects of MECP2 Duplication Syndrome are devastating—and our community has the power to change that.If we all come ...
07/21/2026

The effects of MECP2 Duplication Syndrome are devastating—and our community has the power to change that.

If we all come together around the world, we can drive progress toward a better future.

Right now, that means joining REMEDS.

Even if you signed up for a different registry or database in the past, you must join again in REMEDS due to data privacy restrictions.

First, find your genetics report showing the MECP2 Duplication Syndrome diagnosis. Then, join today at www.REMEDS.org

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Die Auswirkungen des MECP2-Duplikationssyndroms sind verheerend – und unsere Gemeinschaft kann etwas daran ändern.

Wenn wir uns weltweit zusammenschließen, können wir gemeinsam eine bessere Zukunft gestalten.

Das bedeutet jetzt: Treten Sie REMEDS bei.

Auch wenn Sie sich in der Vergangenheit bereits bei einem anderen Register oder einer anderen Datenbank registriert haben, müssen Sie sich aufgrund von Datenschutzbestimmungen erneut bei REMEDS anmelden.

Suchen Sie zunächst Ihren Gentestbericht mit der Diagnose MECP2-Duplikationssyndrom. Melden Sie sich dann noch heute an unter www.REMEDS.org

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MECP2重複症候群がもたらす影響は深刻です。でも、私たちはその未来を変える力を持っています。
世界中の家族が一つになれば、より良い未来に向けた前進を加速させることができます。
そのために今、私たちにできることは、REMEDSに登録することです。
以前、別のレジストリーややデータベースに登録された方も、個人情報保護に関する規定により、REMEDSへ改めて登録していただく必要があります。
MECP2重複症候群と診断されたことが記載されている遺伝子検査の結果（報告書）をご準備いただき、www.REMEDS.orgに登録しましょう！

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Tucson, AZ

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