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CNF O&A - May 28 2019                                                                               View this email in your browser

Dear CNF Partners,
 

This past week, there have been a few new approvals by the FDA that could lead the way for big changes for some of the child neurology community in the years to come. You might have already seen them on our social media channels, but we thought that we'd share them here too. 
NAYZILAM® (midazolam) Nasal Spray for Seizure Rescue
NAYZILAM® (midazolam) is a seizure rescue medication used, "to treat intermittent, stereotypic episodes of frequent seizure activity in people living with epilepsy in the US." 
Before this approval, the only available seizure rescue medications had to be administered either orally, or rectally, which as you can imagine might be difficult or impossible while a seizure is taking place. You can learn more about how of NAYZILAM® (midazolam) works via the press release issued by UCB. 
Do you currently have a seizure rescue plan? In partnership with the Epilepsy Foundation, and the Danny Did Foundation, CNF created a Seizure Action Plan form to walk you through everything you need to create a rescue plan for your loved one. 
Zolgensma IV Gene Therapy for SMA
Avexis received FDA approval for Zolgensma, an IV Gene Therapy treatment for Spinal Muscular Atrophy (SMA). It has been initally approved for, "patients with all forms and types of SMA who are under two years of age at the time of dosing." And Avexis is currently running clinical trials for intrathecal (IT) delivery in older patients. Read more on the CURE SMA blog. 
Both UCB and Avexis are members of the Child Neurology Foundation's Corporate Advisory Board. We're grateful for their participation in our CAB and their support. 
CNF recently updated our Disorders Directory to include information from the National Institute of Neurologic Disorders and Stroke's Disorder Database.
If you've been sharing information from our Directory, don't forget to update your links! 
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Ann Tilton, MD; CNF President

If you have questions about CNF Opportunities & Announcements content or about the CNF, please contact us:
Allyson Eyermann; Operations Administrator 
www.childneurologyfoundation.org | info@childneurologyfoundation.org | 612.928.6325

Copyright © 2019 Child Neurology Foundation. All rights reserved.






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