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NDIS

Nov 8, 2020
2 min

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

12 views0 comments

Celebrating Neurodiversity in the Classroom

Jonathan Shar

Sep 10, 2020
8 min

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

8 views0 comments

Google’s Project Euphonia Asking Patients to Help With Speech Recognition Technology

Jonathan Shar

Aug 28, 2020
2 min

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

3 views0 comments

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

Jonathan Shar

Aug 28, 2020
2 min

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

1 view0 comments

Pharnext’s PXT864 Shows Promising Neuroprotective Effects in ALS, Early Study Shows

Jonathan Shar

Aug 28, 2020
3 min

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...

6 views0 comments

Viltepso Commercially Available in the US for DMD Treatment

Jonathan Shar

Aug 26, 2020
2 min

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

8 views0 comments

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

Jonathan Shar

Aug 20, 2020
2 min

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

6 views0 comments

Jonathan Shar

Aug 12, 2020
3 min

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

4 views0 comments

New Streaming Channel Showcases Rare Disease Films

Jonathan Shar

Aug 10, 2020
4 min

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

6 views0 comments

Overuse Of Remote Medical Consultations Threatens The Safety Of Disabled Patients

Jonathan Shar

Aug 10, 2020
5 min

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.

3 views0 comments

The Disability Rights Movement Needs to Be More Inclusive

Jonathan Shar

Aug 4, 2020
3 min

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

3 views0 comments

Jonathan Shar

Aug 3, 2020
3 min

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

1 view0 comments

Thread-based Wearable Device May Help Diagnose, Monitor CF and Other Conditions

Jonathan Shar

Jul 31, 2020
4 min

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

8 views0 comments

Phase 3 Update: Levosimendan Fails to Ease Breathing Problems in ALS Patients

Jonathan Shar

Jul 31, 2020
2 min

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

7 views0 comments

Proteins — and labs — coming together to prevent Rett syndrome

Jonathan Shar

Jul 30, 2020
4 min

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

10 views0 comments

A Boy With Muscular Dystrophy Was Headed For A Wheelchair. Then Gene Therapy Arrived

Jonathan Shar

Jul 28, 2020
8 min

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.

5 views0 comments

New FUS Mutation Linked to Aggressive ALS in Teenage Girl

Jonathan Shar

Jul 28, 2020
2 min

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

9 views0 comments

Superfest film shorts, panel examine increasing visibility of disability in mainstream film

Jonathan Shar

Jul 25, 2020
3 min

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

3 views0 comments

Proclamation on Anniversary of Americans with Disabilities Act, 2020

Jonathan Shar

Jul 25, 2020
3 min

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.

10 views0 comments

Novel Function of MeCP2 Protein Could Be Route to Rett Therapy, Study Suggests

Jonathan Shar

Jul 25, 2020
3 min

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.

1 view0 comments

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