Capitol Hill Updates The Children’s Health Insurance Program (CHIP) will expire on September 30 and must be reauthorized before that time. CHIP is essential for families who do not qualify for Medicaid, but struggle to afford private insurance. Some stakeholders support using the Creating and Restoring Equal Access to Equivalent
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Archive for August, 2017
“Loie’s Disease” Children’s Book Provides Resource for Leukodystrophy Families
This summer, Children’s Hospital of Philadelphia social worker Sarah Stoney and Calliope Joy Foundation co-founder Maria Kefalas were discussing how difficult it was for families to explain leukodystrophy to children. A year earlier, a school teacher emailed Kefalas to ask if there were any resources to talk about leukodystrophy for
Leukodystrophy Family Forum Launched
In 2016, two moms named Jenny and Maria were talking about how hard it was to hear the word leukodystrophy for the first time. Jenny remembered how she had been given a piece of paper and advised not to look up the disease on the web. The other mom, Maria,
Mollii Suit: Assistive Device for Muscle Stiffness, Spasticity, & Motor Disability
The Mollii Suit is a new assistive device developed by Inerventions, a Swedish company, that can “relax spastic, tense, and aching muscles.” The company was started by Mollii inventor Fredrik Lundqvist in 2009. According to their website, Mollii is currently being used by people with cerebral palsy, stroke, spinal cord injury,
Researchers at the University of Buffalo Study Novel Proteins’ Role in Myelination
M. Laura Feltri, MD, professor of biochemistry and neurology, is leading research to determine whether a new family of molecules prevents demyelination and nerve degeneration in patients with peripheral nerve diseases. Research Builds on 2014 Finding The novel molecules, called prohibitins, are required for nerves to form correctly and remain healthy. Feltri and