smithkingsmore.networkforgood.com/projects/19849…

What is Smith-Kingsmore Syndrome? Here is a short video explaining this #ultrarare #RareDisease smithkingsmore.networkforgood.com

No one is more motivated to advance progress against disease than patients fighting to survive. That’s why we support patient-led organizations to accelerate progress against rare diseases #RareAsOne

Smith-Kingsmore Syndrome is a neurodevelopmental genetic disorder caused by changes in the MTOR gene. One of the symptoms of SKS is seizures which are difficult to treat in people with SKS. Our mission is to support SKS research to help kids like Bella! smithkingsmore.networkforgood.com

Every year, for SKS Awareness Day, Jack walks for the SKS babies. Join us! We’re $3K away from a $20K match grant. Jack doesn’t want other children to go thru difficulties he’s faced. Together we can speed the science for treatment options for SKS. Thanks! smithkingsmore.networkforgood.com/projects/19849…

Zach Wichter stuck on the jet bridge in omaha United Airlines broke my wheelchair beyond me being able to use it. Heartbroken. Ground staff dropped chair off the conveyor belt. No words. Exhausted. #WheelchairRights #DisabilityTwitter

We are looking forward to connecting with Pediatricians, researchers and clinicians at PAS 2024!

Excited to be at #PAS2024! Come see Susan Dando and Sarah Lepore in the #advocacy section of Exhibit Hall! #rarediseaseawareness #cureSKS #smithkingsmoresyndrome

Thank you to all who stopped by to learn about ultra rare Smith-Kingsmore Syndrome! It has been an honor to share information about SKS with all of you! #PAS24selfie #PAS2024

.Carlos Prada & colleagues of Human Genetics and Genomics Advances' latest article found that low-dose rapamycin treatment shows promise for improving circadian rhythms and sleep-wake behavior, as well as other symptoms, in individuals with Smith-Kingsmore syndrome: cell.com/hgg-advances/f… #ASHG

🩷 On August 1st we kick off our FIFTH International Smith-Kingsmore Syndrome Awareness Month! Join us to celebrate our community and raise funds to accelerate SKS research. 🩷 Your Help = Our Hope! Click here to set up a personal fundraiser today! smithkingsmore.networkforgood.com/projects/23001…

Check out the new article highlighting groundbreaking research showing how SKS impacts sleep and the potential for low-dose rapamycin as a treatment. Special thanks to the researchers Carlos Prada John Hogenesch Dave F Smith and team! cell.com/hgg-advances/f…

🩷 International Smith-Kingsmore Syndrome Awareness Month is here - and it's our 5th birthday!! 🩷 We have a bold goal of raising $100,000 for SKS research and programs! Our SKS Foundation Board have pledged a match of $50,000. Your Help = Our Hope!! smithkingsmore.networkforgood.com

Awareness is the first step towards understanding and taking action! During the month of August, we invite you to educate your community about our ultra-rare condition through our daily ☀️ SKS Fact of the Day ☀️ smithkingsmore.org

Daily during Smith-Kingsmore Awareness month, we are sharing SKS facts! Visit our website to learn more! Donate today to support our mission! smithkingsmore.networkforgood.com

SKS Fact of the Day: The Power of Community! 🌟 Since 2019, our incredible families and community have generously funded five years of groundbreaking Smith-Kingsmore syndrome research. Together, we’re making a difference! 💪❤️ smithkingsmore.networkforgood.com

🌟At the Smith-Kingsmore Syndrome Foundation, we aim to fund pioneering research! 🌟In 2020, we awarded UF $170,000 to advance SKS research. 🌟 Help us sustain this momentum by donating today! smithkingsmore.networkforgood.com

🩷 On August 15th, we celebrate SKS Awareness DAY! And it's our 5th birthday celebration! 🩷 The SKS Foundation has funded five years of SKS research - help us keep this going by sharing this link with your friends and family and donating today! smithkingsmore.networkforgood.com

It’s Smith-Kingsmore syndrome awareness day!🎗️🎗️ Smith-Kingsmore Syndrome Foundation #smithkingsmoresyndrome Check out my daughter story. Link below 💜🎗️ smithkingsmore.networkforgood.com/projects/23118…