Open Letter to Joe Biden regarding Disability Inclusive Policy and Nothing About Us Without Us
Hope wins over Fear, America may be "First" but a divided nation creates an unstable world.
Congratulations President-Elect @JoeBiden
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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
Sep 10, 20208 min read
Celebrating Neurodiversity in the Classroom
Tracy Murray has witnessed a lot of change in her 27 years of work in classrooms. But in her view, no shift has been as radical—or as posit
20 views0 comments
Jonathan Shar
Aug 28, 20202 min read
Google’s Project Euphonia Asking Patients to Help With Speech Recognition Technology
Team Gleason and CureDuchenne have teamed with Google’s Project Euphonia to make automated speech recognition more accessible to people wit
7 views0 comments
Jonathan Shar
Aug 28, 20202 min read
Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input
Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for ne
7 views0 comments
Jonathan Shar
Aug 28, 20203 min read
Pharnext’s PXT864 Shows Promising Neuroprotective Effects in ALS, Early Study Shows
Pharnext’s investigational oral combination therapy PXT864 prevents degeneration of motor neurons and their point of contact with...
9 views0 comments
Jonathan Shar
Aug 26, 20202 min read
Viltepso Commercially Available in the US for DMD Treatment
NS Pharma‘s Viltepso (viltolarsen) is now commercially available in the U.S. for people with Duchenne muscular dystrophy (DMD) amenable to e
16 views0 comments
Jonathan Shar
Aug 20, 20202 min read
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pu
12 views0 comments
Jonathan Shar
Aug 13, 20203 min read
FDA Approves Targeted Treatment for Rare Duchenne Muscular Dystrophy Mutation
Today, the U.S. Food and Drug Administration granted accelerated approval to Viltepso (viltolarsen) injection for the treatment of Duchenne
9 views0 comments
Jonathan Shar
Aug 11, 20204 min read
New Streaming Channel Showcases Rare Disease Films
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to fin
12 views0 comments
Jonathan Shar
Aug 10, 20205 min read
Overuse Of Remote Medical Consultations Threatens The Safety Of Disabled Patients
The human capacity to embrace change and pivot rapidly has been seen as one of the few positives to emerge out of the gloom of the pandemic.
10 views0 comments
Jonathan Shar
Aug 4, 20203 min read
The Disability Rights Movement Needs to Be More Inclusive
Illustration of people of diverse racial backgrounds. With the anniversary of the Americans With Disabilities Act, a lot of disabled peop
8 views0 comments
Jonathan Shar
Aug 4, 20203 min read
New genetic cause of a form of inherited neuropathy
Inherited mutations in a gene that keeps nerve cells intact were shown, for the first time, to be a driver of neuropathy known as Charcot-Ma
3 views0 comments
Jonathan Shar
Jul 31, 20204 min read
Thread-based Wearable Device May Help Diagnose, Monitor CF and Other Conditions
Researchers have developed the first thread-based flexible patch that can be sewn into clothing to monitor — in real-time — several molecule
13 views0 comments
Jonathan Shar
Jul 31, 20202 min read
Phase 3 Update: Levosimendan Fails to Ease Breathing Problems in ALS Patients
Orion Corporation’s oral therapy levosimendan (ODM-109) failed to preserve lung function and overall functionality in people with amyotrophi
12 views0 comments
Jonathan Shar
Jul 30, 20204 min read
Proteins — and labs — coming together to prevent Rett syndrome
New discoveries about the disruption of condensates in the neurodevelopmental disorder Rett syndrome provide insights into how cells compart
14 views0 comments
Jonathan Shar
Jul 28, 20208 min read
A Boy With Muscular Dystrophy Was Headed For A Wheelchair. Then Gene Therapy Arrived
This is the story of a fatal genetic disease, a tenacious scientist and a family that never lost hope.
12 views0 comments
Jonathan Shar
Jul 28, 20202 min read
New FUS Mutation Linked to Aggressive ALS in Teenage Girl
A new mutation in the FUS gene, which results in a shorter version of the FUS protein that cannot enter form the cell nucleus to work as it
13 views0 comments
Jonathan Shar
Jul 26, 20203 min read
Superfest film shorts, panel examine increasing visibility of disability in mainstream film
Superfest, the world’s longest disability film festival, continued its ADA-30 celebration with Disability Pride Philadelphia by screening fi
8 views0 comments
Jonathan Shar
Jul 26, 20203 min read
Proclamation on Anniversary of Americans with Disabilities Act, 2020
Today, we reflect on the progress we have made as a Nation in securing equal rights and defending the inherent dignity of all Americans.
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Jonathan Shar
Jul 25, 20203 min read
Novel Function of MeCP2 Protein Could Be Route to Rett Therapy, Study Suggests
Mutations in the MECP2 gene, which lead to most cases of Rett syndrome, prevent the formation of droplet-like structures that regulate DNA.
5 views0 comments
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