Robocamp at the Rancho Los Amigos National Rehabilitation Center

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This summer, seven children several years post-hemispherectomy participated in the first robotics-assisted physical therapy camp.  Fondly known as the Magnificent Seven, these kids received intensive physical therapy specifically targeted at their hand, wrist, and ankle (areas most affected by hemispherectomy surgery) as well as overall locomotion.  But fun was in the mix too, in the form of recreational yoga classes and other activities aimed to encourage camaraderie and improve social skills.

This exciting and innovative program initiated by The Brain Recovery Project at the Rancho Los Amigos National Rehabilitation Center in Downey, California, promises to be the platinum standard for 21st century neuro-rehabilitation for children with disabilities.  By providing two weeks of intensive, robotics-assisted therapy in a camp-like environment – rather than the sterile setting of a hospital – children participate in a program that targets their specific neurodevelopmental challenges.  Grouped with children with similar disabilities, they get to hang out with kids “just like them” in a fun and engaging environment.

Dance lessons at Robocamp help with balance.

Dance lessons at Robocamp help with balance.

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The Importance Of Published Research: Why It Matters For Kids With Disabilities

fMRI at UCLA of hand movement after hemispherectomy.

The internet has changed the landscape for parents of children with disabilities.   Years ago, a parent of a child with a rare condition or who had undergone an uncommon procedure like a hemispherectomy had few resources to draw from when trying to understand the full scope of outcomes and challenges their child would face throughout the lifespan. Today, there are countless websites of non-profit, governmental entities, and other groups with pages of information, as well as various portals through which parents and caregivers can conduct an in-depth search of research publications.

Social media has especially made a significant impact on the communication of information. Hundreds of Facebook pages devoted to conditions from Angelman’s to Zellweger syndrome help parents connected with other families and navigate complicated diagnoses.  A parent of a newly diagnosed child anywhere in the world can quickly join a group, post a question, and receive responses from well-informed parents much further along in the journey than them.

But this is not enough.

Clinicians need published research to shape their treatment plans. A parent telling a doctor that they “heard it online” is unconvincing to the practitioner.

Insurance companies need published research to prove the efficacy of a treatment before they agree to pay for it.

School districts need evidence-based research methodologies to help educate a neurologically complex child.

This is why we are dedicated to initiating research at some of the world’s most prestigious institutions. We do this by making introductions across disciplines, hosting scientific workshops, funding research, and assisting with grant writing and submissions to scientific journals.

Here’s a partial list of publications in the pipeline that we have initiated, facilitated, funded in part, or co-authored:

  1. “Reading and Phonological Processing after Left Hemispherectomy” submitted to Cognitive Neuropsychology (with the USC and UCLA);
  2. “Receptive Syntax after Cerebral Hemispherectomy: The Strengths and Limitations of the Right Hemisphere” submitted to Epilepsy and Behavior (with USC and UCLA);
  3. “Reading Networks for English and Spanish in the Isolated Right Hemisphere” submitted to Neurocase (with UCLA);
  4. “Resting State Analyses of Reading Circuitry in the Isolated Right Hemisphere” manuscript in preparation (with University of Miami);
  5. Structural Changes Following Hemispherectomy: Voxel-Based Morphometry Analysis,” manuscript in preparation (with Univeristy of Jena, Germany);
  6. It Is Not What They Do, It Is How They Do It: Neuropsychological Profiles of 2 Young Adults after Right and Left Cerebral Hemispherectomy,” manuscript in preparation (with UCLA);
  7. “Comparing Reading Profiles of Children with Dyslexia and Cerebral Hemispherectomy,” manuscript in preparation (with Univeristy of Haifa);
  8. “Proceedings Of The International Workshop on Brain Plasticity, Hemispheric Specialization, and Neuro-Rehabilitation After Cerebral Hemispherectomy,” manuscript in preparation with conference speakers.

Introducing The Airy Arm – A 3D Printed Exoskeleton For Children With Hemiplegia

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.

e-NABLE volunteer Nick Parker does a great job of explaining what they do, here:

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.