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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Thank you

Hannah uses her partially paralyzed left arm to play a video came.

photo4As the year draws to a close, we want to thank you for your support.  It’s because of you that we’re able to develop rehabilitation programs for incredible children living with half a brain.

Children like Hannah, who at the tender age of two months old, had half her brain removed to stop catastrophic epilepsy. Seizure-free since surgery, she struggles to use her left arm because half the upper motor neurons in her brain – the only neurons responsible for voluntary movement, and affected by diseases like ALS – were removed during the surgery.

Hannah is one of the participants in Robocamp at Rancho, the first neurorehabilitation camp in the world to use robotics-assisted therapy to help kids like her regain some function in their affected arm.

Children with disabilities deserve access to a physical rehabilitation program that is both effective and fun.  What we will learn from Hannah helps not only children recovering from hemispherectomy, but also for kids after stroke, brain injury, or challenged by cerebral palsy.

There’s still time to help us build Robocamp by contributing to our Indiegogo campaign here before midnight on December 31st.

Warm wishes to you and your family this holiday season!

Sincerely,

Brad and Monika Jones, Co-Founders

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.

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