Sanfilippo Syndrome Robs Me of Closure
I have an interesting relationship with my sister, Abby. Because she has special needs, our relationship has always been rocky. I often wou
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CripChat Australia #198: Beyond the NDIS: Services and Supports for People with Disabilities
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CripChat Australia #197: Quality and Safeguard Reforms – Will They Protect People with Disabilities?
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CripChat Australia | On Ableism: Part 1: Discrimination, Prejudice, Intolerance
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CripChat Australia #181: Senate Inquiry on the NDIS Reform Bill: Bombshells and Revelations
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Australian Disability Limited
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Jonathan Shar
Jul 26, 20202 min read
Music Brings My Daughter Back to Me
My 24-year-old daughter, Abby, has a terminal disease called Sanfilippo syndrome.
16 views0 comments
Jonathan Shar
Jul 24, 20202 min read
How to Deal Anxiety
I’ve known for a long time that I have anxiety.
10 views0 comments
Jonathan Shar
Jul 24, 20202 min read
Potential Sanfilippo Treatment, SLS-005, Advances as Orphan Drug in EU
The Committee for Orphan Medicinal Products, a branch of the European Medicines Agency (EMA).
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