by PURA Syndrome Foundation | May 17, 2024 | Annual Conference
In an effort to find treatment for PURA Syndrome Peter has been developing a drug screening pipeline using C. elegans and zebrafish as disease models. The idea is to test existing FDA approved drugs for therapeutic benefits in the PURA syndrome disease context....
by PURA Syndrome Foundation | May 16, 2024 | Annual Conference
This session will be a discussion on Sudden Unexpected Death in Epilepsy (SUDEP) and reducing your risks, including the use of seizure detection devices. In-person registration: https://purasyndrome.networkforgood.com/…/65425-2024… Virtual registration:...
by PURA Syndrome Foundation | May 15, 2024 | Annual Conference
This session will focus on pediatric epilepsy, reviewing seizure types and epilepsy syndromes as a cornerstone. The talk will cover the typical diagnostic approach used by pediatric epileptologists, and will then briefly discuss some of the risks associated with...
by PURA Syndrome Foundation | May 15, 2024 | Annual Conference
36 days until the 2024 PURA Syndrome Conference in Chicago!!! The conference will kick off the evening of Friday, June 21st and go to the afternoon on Sunday, June 23rd. Book your room by May 22nd to get our special conference rate. If you’ve already booked your...
by PURA Syndrome Foundation | May 14, 2024 | Annual Conference
Anna will present a comprehensive course designed to support families of individuals with PURA Syndrome in initiating and facilitating communication using Augmentative and Alternative Communication (AAC) methods. This course provides an understanding of AAC...
by PURA Syndrome Foundation | May 13, 2024 | Annual Conference
Learn about the specialty of Developmental and Behavioral Pediatrics – a scarce but important provider bridge between the medical, therapy, and educational worlds. Dr. Weedon will discuss how to partner with your providers and advocate for understanding the needs of...
by Eva Kittay | May 11, 2024 | Stories
On the first Mother’s Day that my daughter, Sesha, no longer lived at home with us, I received a lovely basket with various hand-crafted gifts from her. With help from her aide, she handed it over to me, and as I gushed, she looked so pleased. I am fortunate enough...
by PURA Syndrome Foundation | May 8, 2024 | Annual Conference
We’re counting down to the 2024 PURA Syndrome Conference in Chicago, IL which is only 44 days away! We hope to see you there!! Watch out as we highlight speakers and content over the coming weeks. A great way you can support the conference, while showing off the...
by PURA Syndrome Foundation | Mar 20, 2024 | Annual Conference
This year’s conference will be special in so many ways. One way you can participate is to feature your PURAPerfect Child or your PURAPerfect Relative in the conference program and online! We are now offering families and friends the ability to purchase program...
by PURA Syndrome Foundation | Mar 14, 2024 | Siblings
We are pleased to announce the launch of our PURA sibling outreach offerings! Our Siblings Ambassador, Chrissie Brock, has been hard at work putting together these initial offerings and has many ideas on how to expand them going forward. Our goal is to offer a variety...
