11 yr old Marley was born with a mutation in a gene called NARS1, which is involved in making a protein critical to the central nervous system. Later this year, she may become the first person in the world to receive personalized therapy for her disease. https://t.co/b5in53jR3Y
Amazing front page news today, our very own Dr. Kaitlin Batley continues to pioneer treatment for rare genetic disorders
@RareDiseases#NARS1
All credits to @dallasnews
So proud of our team at @UTSWPedsNeuro
MDA Study Highlights Lack of Psychosocial Care Services for Duchenne Muscular Dystrophy https://t.co/8JToBxttJl via @neurology_live
There's still time to register for the 47th Annual Carrell Krusen #NMSK Symposium.
🌟 Alan H. Beggs, Ph.D. joins us as the keynote speaker from @harvardmed 🌟
Register Today: https://t.co/uXT36n2zlx
Calling all neuromuscular experts! Join us at the 47th Annual Carrell Krusen Symposium from Feb 20-21, 2025. Interact with a wonderful panel and discuss genotype/phenotype correlation for congenital myopathies.
Register Today: https://t.co/uXT36n2zlx
#NMSK
Had a great time being part of a panel discussion on developing our adult care model for DMD pts at Parkland. We work with our amazing peds team to transition care to our adult multidisciplinary clinic. So grateful to see this program come to fruition @UTSWNeurology@Parkland
Excited to get our center’s experience with neurology e-consults published! A useful strategy to address the growing neurological demand, especially in a safety-net clinic. We hope this paper can be a blueprint for other institutions to implement. https://t.co/JABHvBH8oo
So thankful to have been a part of MDA camp this year! What an adventure with the best med shed crew and most amazing campers 💪🏼🏕️ @MDAorg@childrenshealth
PPMD is excited to share that a consensus statement providing insights from clinicians who care for patients with #Duchenne into the current therapeutic landscape and access to novel therapies has been published in the Annals of Child Neurology Society. https://t.co/8RCyhNncEa
Proud of our team and excited to share our review of pediatric patients with Myasthenia Gravis cared for at @UTSWMedCenter and @childrenshealth@UTSWPedsNeuro
“Juvenile Myasthenia Gravis in North Texas: Clinical Features, Treatment Response and Outcomes”
https://t.co/2o57Nw8qQl
What a wonderful #CarrellKrusen. From thought-provoking presentations to valuable insights, your contributions made this event special. Pleasure seeing everyone.
Shoutout to @IannacconeSusan, @jayatrivediutsw, @kbatleymd, & the team for their incredible work behind-the-scenes!
You did it!
We’ve now reached our goal of 100 percent newborn screening of spinal muscular atrophy (SMA) in all 50 states, with the addition of Hawaii at the start of 2024.
Thank you for everything you do to help improve the lives of everyone impacted by SMA.