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Advancing the Understanding of Special Education and Therapeutic Needs of Children with Neurodegenerative Disorders

August 10, 2021

The challenges of the pandemic shined a light on the critical role of special educators and rehabilitative therapists to protect the skills of children’ with neurodegenerative disorders.

This academic publication and white paper provides teachers with a guide for educational priorities and service delivery to children with neurodegenerative disorders.

“The COVID pandemic and distant learning was already an unprecedented challenge for children without underlying diseases and this [academic and white] paper gives a voice to those who entered into the pandemic already out of a very disadvantaged position.”

Mathias Schmidt

President and CEO of JCR USA & ArmaGen, Senior Executive Director global Strategy, Board Member at JCR Pharmaceuticals Co Ltd

Nothing about the past year and a half has been “normal,” especially school for children. But Cara O’Neill was seeing first-hand with her daughter Eliza, who has Sanfilippo Syndrome, and hearing from other parents about the impact that school closure and the inadequacy of virtual programming was having on children with neurodegenerative diseases.

“When you have a child with a progressive disease, ‘We’ll make it up later,’ just doesn’t work,” said O’Neill, MD, FAAP, and Chief Science Officer for Cure Sanfilippo Foundation.

“Appropriate educational opportunities can’t wait in these diseases and their loss imparts a lasting mark on the children and families. It is a difficult situation and a challenge we all need to think carefully about how to better address going forward.”

So O’Neill called frequent collaborator and highly-respected neuropsychologist at the University of Minnesota Twin Cities Julie Eisengart about working together to get the word out about the severe impact the pandemic was having on children with neurodegenerative diseases via a open-access scientific publication.

From this conversation grew a broader collaboration with the wonderful teams at the University of Minnesota Neurodevelopmental Rare Disease Program, Project Alive (MPS II), and the National MPS Society to create an openly-available publication, “Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses.”

The open-access publication, “Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses,” highlights the massively-important role that educators and therapists play in supporting the neurocognitive function and quality of life of children with neurodegenerative diseases. This provides a resource for how educators and therapists can best serve these children in pandemic circumstances and important concepts regarding their education in general.

The academic paper has been distilled into actionable items for educator

The extensive publication has also been boiled down into a White Paper with key takeaways. The white paper, “Lasting Lessons from the Pandemic: Advancing the Understanding of Special Education and Therapeutic Needs of Children with Neurodegenerative Disorders,” provides educators and administrators with information they can begin implementing immediately.

These guidelines review factors to consider as parents and educators plan for the academic year ahead and determine how to provide for children with neurodegenerative disorders in circumstances where in-school teaching or in clinic treatment is compromised.

Ultimately, regardless of the academic or global situation, children with neurodegenerative conditions require multiple domains of special education, and rehabilitative intervention and/or supportive therapies at a high level of service intensity.

In-person education and supportive care, whether at school or in the child’s home, is the best method for meeting the needs of children with neurodegenerative disorders.

Access the open-access publication.

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Download the white paper.

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