Tatton Brown Rahman Syndrome (TBRS) Community Inc.

Happy Friday! Let's spread a little inspiration to go into the weekend 💕 We all have hard days, and sometimes wise words can soothe the soul. What's your favorite quote? One that you find yourself re-reading on those hard days. One that helps calm your worries, or brings challenges into perspective, or even gives you a giggle when it's needed most. Drop an inspirational quote that you love in the comments! A little perspective and positivity goes a long way. ⬇️ #TBRSCommunity #RareDiseaseAwareness #RareDiseaseSupport

Celebrating Our TBRS Fundraising Champions! 🌟 Thanks to the O'Hara Family for their effort and dedication to creating real change for our community! Each year, TBRS families raise over $100,000 by hosting their own amazing fundraisers—cornhole tournaments, wine tastings, cocktail parties, progressive dinners, golf tournaments and marathons. Every event, big or small, makes a difference. We need more families to join this incredible effort! If you're interested in hosting your own event, contact Jill. Let's come together and make an even greater impact! jill@tbrsyndrome.org

Today, July 25, is the first-ever Genetic Testing Action Day! We’re proud to raise awareness about why early genetic testing matters and urge families facing developmental / medical concerns to talk to their doctors about genetic testing. Join the #StartGenetic movement by spreading the message on social media and visit StartGenetic.org to download the free Parent Toolkit. #Genetictestingactionday #TBRSCommunity

Too many families face years of uncertainty about their child’s development and medical issues. That’s why we’ve partnered with CureSHANK to promote early genetic testing as a first step through Genetic Testing Action Day on July 25. Visit StartGenetic.org to access family friendly tools and be part of the #StartGenetic movement. #genetictestingactionday #TBRSCommunity

We’re proud to support the #StartGenetic campaign to raise awareness about early genetic testing. Mark your calendar for Genetic Testing Action Day on July 25 and download the free Parent Toolkit at StartGenetic.org. #genetictestingactionday #TBRScommunity

Our team recently shared the Overgrowth Syndromes Alliance's vision at two major events: Chan Zuckerberg Initiative Science in Society- Jill Kiernan emphasized how cross-syndrome collaboration accelerates understanding and creates opportunities for faster scientific progress. National Organization for Rare Disorders Rare Disease Scientific Symposium- Christal Delagrammatikas described OSA's work to build infrastructure and connect research across genetic overgrowth conditions that share similar clinical characteristics and underlying biology. 🔑Key takeaways Researchers often stay in their own "gene lane" but biology tends to swerve across lanes. We will move faster by working together! Photo credit to NORD #overgrowth #patientadvocacy #collaboration #patientsfirst #raredisease

📢 Happening TOMORROW! Don’t forget — Mylie will be presenting her Disease Concept Model for Tatton Brown Rahman Syndrome (TBRS) tomorrow on Zoom! 🗓️ Wednesday, May 7 🕟 4:30 PM ET 💻 Location: Zoom This presentation is the result of months of interviews, research, and YOUR shared experiences. It’s a powerful look at how TBRS affects daily life — and how your voices are shaping the future of research and care. ✨ Whether you’ve been involved in the project or are hearing about it for the first time, we’d love to have you there. Can’t attend live? Be sure to register so we can send you the recording! 👉 Register here now --> https://lnkd.in/emxBd5Tx (Or scan the QR code) We can’t wait to see you there!

📣 Happening Next Week! We’re just one week away from a special presentation you won’t want to miss! Mylie, a Genetic Counseling graduate student, will be sharing the results of her Disease Concept Model for Tatton Brown Rahman Syndrome (TBRS) — a project built from the real stories, voices, and experiences of our TBRS Community. 🗓️ Date: Wednesday, May 7 🕟 Time: 4:30 PM ET 💻 Where: Zoom This presentation will highlight the true impact of TBRS on individuals and families — and how your stories are already changing the way researchers and clinicians understand and approach care for our community. ✨ Be part of the conversation. Be part of the change. Can’t make it live? No problem — just register and we’ll send you the recording. 👉 Scan the QR code to register here!

🌟 Coming Up in Just a Few Weeks — Don’t Miss This! 🌟 We’re thrilled to share that Mylie, a graduate student in Genetic Counseling, will soon be presenting her powerful new Disease Concept Model for Tatton Brown Rahman Syndrome (TBRS) — and you're invited! 📅 Save the Date: Wednesday, May 7 🕟 Time: 4:30 PM ET 💻 Location: Zoom Through interviews and in-depth research, Mylie has captured the everyday realities of life with TBRS — and now she’s bringing those insights back to the community that made it possible. This is your chance to see how your voices and stories are helping shape the future of TBRS research and clinical care. 🔗 Click here to sign up today! --> https://lnkd.in/emxBd5Tx (Or scan the QR code!)

✨ You're Invited! ✨ We’re excited to share that Mylie, a graduate student in Genetic Counseling who recently completed a Disease Concept Model for Tatton Brown Rahman Syndrome (TBRS), will be presenting her findings to the TBRS Community! 📅 Date: Tuesday, May 7 🕟 Time: 4:30 PM ET 📍 Location: Zoom This presentation will highlight the real-life impacts of TBRS on individuals and families, as captured through interviews and research. It’s a chance to hear how your stories and experiences are helping shape the understanding of TBRS in the research and medical world. We hope you'll join us for this important conversation! 💙 If you are unable to attend, please sign up anyway! We will share a recording with those who are unable to attend live. Scan the QR code above or click the link below to register! 🔗 https://lnkd.in/emxBd5Tx