The e-NABLE community on Google first came to our attention when a friend of Brad Jones, our co-founder and treasurer, mentioned the great work this group of volunteers was doing for children who are missing fingers or hands due to war, disease, or birth defects.  Printing 3D prosthetic hands from crowd-sourced designs, e-NABLE volunteers produce low cost solutions for children with upper limb deficiencies.  This is crowdsourcing in its purest form:  volunteers who build on each other’s ideas and share them with the rest of the world for the greater good.

 

We introduced ourselves to the Google group back in June and asked if they might be able to help develop a hand exoskeleton for children with hemiplegia after hemispherectomy.  After a few Google Hangout meetings and email exchanges with Ivan Owen, Jorge Zuniga, Jean Peck, Alex Madinger, Nick Parker, and Jon Schull, where we explained the common hand, wrist, and finger impairments after hemispherectomy surgery, the team got to work.  Building on input from the entire team, Ivan Owen developed and printed several initial versions of the exoskeleton (see here and here.)

Then Jon Schull’s student Elizabeth Jackson got in the mix and built on what Ivan and the team had developed, and, well, here it is:  introducing the Airy Arm, a 3D printed exoskeleton for children with hemiplegia after hemispherectomy surgery.  Still in the design phase, this exoskeleton may someday help children with hemiplegia with gross and some fine motor tasks.

Today we introduced hemispherectomy to the over 500 attendees of e-NABLE’s first conference, held at the Johns Hopkins Hospital with the goal of sharing with them a new community of children they can help.

 

Two children post-hemispherectomy have been working with the team on this design. Although there’s much refining of the exoskeleton to do, we think they’re off to a great start.

So what’s the next step? We need to fund the research work of some students so that they can continue to devote their time to this project. Help us fund their research and donate to us today so we can make this exoskeleton a working solution for kids after hemispherectomy surgery.

Disruptive innovation. We like it.

about the author

Monika Jones, JD, is our founder and executive director. Her first son, Henry, had a modified lateral hemispherotomy, revision surgery, then true anatomical hemispherectomy to stop seizures caused by total hemimegalencephaly. She is also the principal investigator of the Global Pediatric Epilepsy Surgery Registry, the only parent-reported data collection to understand the developmental trajectory after pediatric epilepsy surgery. You can read her research works at orcid.org/0000-0001-6086-3236.

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