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An experimental gene therapy was little Alissa's only hope. Now, instead of certain death, she faces an uncertain future.


An experimental gene therapy was little Alissa s only hope. Now, instead of certain death, she faces an uncertain future.
Karen Weintraub, USA TODAY
© Feldborg family photo
Alissa Feldborg
BOSTON Thomas Feldborg and Daria Rokina set off nearly every afternoon to explore this city. They leave from their hotel in the Charlestown neighborhood, pushing their baby carriage, some days heading deep into downtown, others choosing a path along the Charles River. 
Every few minutes, Rokina stops to peek inside and check on 16-month-old Alissa. She gently rubs Alissa s cheek and coos a few soothing words, making sure the little girl is warm enough in her yellow snowsuit and adjusting her sparkly unicorn earmuffs.  ....

United States , University Of Massachusetts , Auburn University , Cummings School , Charles River , Thomas Feldborg , Feldenkrais Method , Pavan Cheruvu , Daria Rokina , Miguel Sena Esteves , Cynthia Tifft , Florian Eichler , Isaac Kohane , Douglas Martin , Matty Wilkinson , Joan Horak , Alissa Feldborg , Terence Flotte , Department Of Biomedical Informatics , Langone Health , National Institutes Of Health , Drug Administration , Harvard Medical School , Auburn University College Of Veterinary Medicine , York University Medical Center , Umass Memorial Medical Center ,

Innovative neurosurgical technique used in Tay-Sachs gene therapy clinical trial


Innovative neurosurgical technique used in Tay-Sachs gene therapy clinical trial
By Susan E.W. Spencer
March 03, 2021
When the first patient in a new clinical trial was given a gene therapy targeting infantile Tay-Sachs and Sandhoff diseases in January, an innovative procedure that represents a “new frontier for neurosurgery” was used to deliver the therapeutic.
Red arrows indicate the location
in the thalamus where the
infusion is targeted.
The trial, by Sio Gene Therapies (formerly known as Axovant), is an open-label, two-stage, clinical study designed to evaluate safety and dose-escalation and safety and efficacy of surgical delivery of AXO-AAV-GM2 to the brain and spinal cord of trial participants with infantile or juvenile GM2 gangliosidosis. Sio licensed exclusive worldwide rights from UMass Medical School for the development and commercialization of gene therapy programs for GM1 gangliosidosis and GM2 g ....

Terencer Flotte , Douglas Martin , Heather Gray Edwards , Oguz Cataltepe , Miguel Sena Esteves , School Of Medicine , Umass Medical School , Auburn University College Of Veterinary Medicine , Sio Gene Therapies , Medical School , Isaac Haidak Professor , Auburn University College , Veterinary Medicine , டக்ளஸ் மார்டின் , ஹீத்தர் சாம்பல் எட்வர்ட்ஸ் , மிகுவல் சேனா ெஸ்டேவேச் , பள்ளி ஆஃப் மருந்து , உமஸ்ஸ் மருத்துவ பள்ளி , ஆபரன் பல்கலைக்கழகம் கல்லூரி ஆஃப் கால்நடை மருந்து , சிோ கீந் சிகிச்சைகள் , மருத்துவ பள்ளி , ஆபரன் பல்கலைக்கழகம் கல்லூரி , கால்நடை மருந்து ,