CTNNB1 Connect & Cure

Connecting families, raising awareness, finding treatments and a cure for CTNNB1 Syndrome 🧬💛💙

[Simons Searchlight @s_searchlight]

We celebrate #CTNNB1AwarenessDay w/ our friends at @ctnnb1org and @ctnnb1cc! 🌟 We have 254 participants with #CTNNB1 -related syndrome registered in #SimonsSearchlight. Find resources, data, gene guides and research at https://t.co/T3RHwaa9xD. Let's raise awareness together! 💛

[National Organization for Rare Disorders (NORD) @RareDiseases]

Meet a new Member of the NORD family of patient organizations: @ctnnb1cc!

CTNNB1 Connect and Cure is a nonprofit that fund research into treatments and a cure for #CTNNB1 and connects families to help their children live their best lives. Learn more: https://t.co/z3DQBLbfbv

[CTNNB1 Connect & Cure @ctnnb1cc]

@RareDiseases We are so excited to join!!! Thank you!

[Effie Parks @OnceUponAGene]

There’s No Place Like Hope @GlobalGenes #WeekInRARE Community, collaboration, and connection, oh my! 3 amazing days of sessions focused on advocacy best practices, actionable strategies for our communities, and valuable connections within the rare disease community

[RARE Revolution Magazine® @RareRevolutionM]

Thank you again, Rare Revolution Magazine, and for those following along this #TuesdayTakeover! We'd love to stay in touch - Please connect with us on social media! You can learn more and sign up for our newsletter here: https://t.co/aC1kZ1xZnM #ctnnb1syndrome
@ctnnb1cc

[RARE Revolution Magazine® @RareRevolutionM]

CTNNB1 Awareness Day is in TWO DAYS! On Thursday, the 25th, will you join us in raising awareness for this rare disease? https://t.co/2iWy8I24zJ #strongertogether #raredisease #ctnnb1awareness #ctnnb1syndrome #careaboutrare
@ctnnb1cc

[CTNNB1 Connect & Cure @ctnnb1cc]

@RareRevolutionM @BainBrainLab 🧬❤️

[RARE Revolution Magazine® @RareRevolutionM]

Our dragonflies are our #why! As we fight for them, we are constantly encouraged by their adaptability, fueling our hope for a better future. Check out the faces and stories of our dragonflies at https://t.co/1CzkDmkjpO #ctnnb1syndrome @ctnnb1cc

[RARE Revolution Magazine® @RareRevolutionM]

@ctnnb1cc is 100% volunteer-run so that our funds can go directly towards our mission. Behind everything we do lies a grounding focus on supporting our patient community, nourishing connections, and progressing the research for treatments. https://t.co/TrSnlsUEWx

[RARE Revolution Magazine® @RareRevolutionM]

Our community and research network are working tirelessly towards potential treatments for those affected by CTNNB1 Syndrome. With 6 approaches underway, we are extremely hopeful for the future! Learn more at https://t.co/y454kPjRBR
@ctnnb1cc

[RARE Revolution Magazine® @RareRevolutionM]

About 1/4 of #CerebralPalsy cases have a genetic cause, and we are at the top of the list! #CTNNB1 symptoms that general CP patients may not be screened for: exudative retinopathy, tethered spinal cord, and heart defects. Learn more at https://t.co/agQixMCNIG @ctnnb1cc

[RARE Revolution Magazine® @RareRevolutionM]

The symptoms? Many. The culprit? #CTNNB1. Where are the rest of our patients? Genetic testing holds the key. Publications about CTNNB1 Syndrome here: https://t.co/ej46NF2OFs. @ctnnb1cc

[Effie Parks @OnceUponAGene]

Special shoutout 2 Shayla in Oakland for her incredible volunteer work, she's sending our president to her 1st @GlobalGenes conference this September! You rock, and we love you! ❤️✈️ #Grateful #RareDisease @ctnnb1cc

[RARE Revolution Magazine® @RareRevolutionM]

Thank you Rare Revolution Magazine for this #TuesdayTakeover! We are so excited to share information about @ctnnb1cc and CTNNB1 Syndrome with you today. We hope all of the RRM followers enjoy and join us for CTNNB1 Awareness day on the 25th! #ctnnb1syndrome #awareness

[Bain Brain Lab @BainBrainLab]

Make sure to set your Pubmed searches...This month "cerebral palsy genetic" popped up so many ROCKSTARS I have the fortune of working with, collaborating with, learning from and more! @drbhooma @drdrariel @BCH_PoduriLab @CPRN_org @WeinbergCP

[Effie Parks @OnceUponAGene]

Attention to those attending the @GlobalGenes Rare Drug Development Symposium next week:
@ctnnb1cc

[Simons Searchlight @s_searchlight]

Our participants have collectively completed 57,460 surveys to date. 🎉 We thank each of you for sharing invaluable information and propelling scientific research forward. 💫 Please finish any pending surveys by visiting your dashboard at https://t.co/opCMbNwx00.

[CTNNB1 Connect & Cure @ctnnb1cc]

https://t.co/ut5AHSBNYZ

#ctnnb1 #raredisease

[CTNNB1 Connect & Cure @ctnnb1cc]

@BainBrainLab Jennifer Bain, MD, PhD, is a physician scientist who specializes in peds neuro. She is making huge impacts in the field, including leading the WFCPC #cerebralpalsy #genetics study. We are so honored to have this amazing expert on our Scientific Advisory Board!

[CTNNB1 Connect & Cure @ctnnb1cc]

Today is the day! Help us reach our goal of $20,000! #ctnnb1 #givingtuesday