Posts by: Forest Ray

Forest Ray

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.

January 7, 2021January 7, 2021

FA Research Alliance Petitioning for Urgent Access to Omaveloxolone

News

With backing from a petition that is now circulating online, the Friedrich’s Ataxia Research Alliance (FARA) will ask Reata Pharmaceuticals and the U.S. Food and Drug Administration to make ... Read more

December 10, 2020December 10, 2020

Dosing Complete in Phase 1 Trial of CTI-1601, Synthetic Frataxin for FA

News

Larimar Therapeutics completed dosing for its single-ascending dose (SAD) Phase 1 clinical trial of CTI-1601, a modified version of frataxin, in the treatment of Friedrich’s ataxia (FA), the company ... Read more

November 12, 2020November 12, 2020

Clinical Studies Continue to Recruit Individuals With FA

News

The Friedreich’s Ataxia Research Alliance (FARA) has shared a list of three clinical studies and one global registry that are open and enrolling people with Friedreich’s ataxia (FA) in the ... Read more

September 24, 2020September 24, 2020

‘Behind the Mystery: Rare and Genetic’ TV Show Brings Focus to FA Challenges

News

Lifetime TV‘s October 2 special edition of “Behind the Mystery: Rare and Genetic” focuses on Friedreich’s ataxia (FA) through the stories of a woman living with the rare disease ... Read more

September 10, 2020September 10, 2020

Broad Institute Launches Accelerator Initiative to Study Friedreich’s Ataxia

News

An initiative called the Friedreich’s Ataxia Accelerator has been launched by the Broad Institute of Massachusetts Institute of Technology (MIT) and Harvard University to develop therapeutic strategies for people ... Read more

September 2, 2020September 2, 2020

Same But Different Photo Contest Celebrates People With Rare Diseases

News, syndicated

Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme ... Read more

August 27, 2020August 27, 2020

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

News

Team Gleason and CureDuchenne have teamed with Google’s Project Euphonia to make automated speech recognition more accessible to people with neurological disorders, including Friedreich’s ataxia. Although automated speech recognition increasingly ... Read more

August 25, 2020August 25, 2020

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

News, syndicated

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient ... Read more

July 30, 2020July 30, 2020

COMP Recommends CTI-1601 as Orphan Drug for Treating Friedreich’s Ataxia

News

The Committee for Orphan Medicinal Products (COMP), an arm of the European Medicines Agency (EMA), has issued a positive opinion about granting orphan drug status to CTI-1601, Larimar Therapeutics’ investigational treatment ... Read more

July 10, 2020July 10, 2020

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

News, syndicated

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease ... Read more

July 2, 2020July 2, 2020

Study: Disease Severity, Older Age and Point Mutation Raise Risk of Diabetes in FA

News

Among people with Friedrich’s ataxia (FA), being older, having a more severe condition, and a point mutation raise the risk for developing diabetes, according to a recent study. The ... Read more

June 25, 2020June 25, 2020

Gene Editing Seen to Restore Frataxin Level in Cells From Patients

News

The CRISPR-Cas9 gene editing technique safely removed the gene expansion that causes Friedrich’s ataxia (FA), allowing for normal frataxin levels and more functional mitochondria in cells taken from patients, an early study ... Read more

June 23, 2020July 28, 2020

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

News, syndicated

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will ... Read more

June 10, 2020June 10, 2020

Coalition Will Address Racial Disparities in Rare Disease Communities

News

The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis ... Read more

March 19, 2020March 19, 2020

Neurofilament Proteins Show Promise as Biomarkers of Neurodegeneration in FA

News

Neurofilament light chain (NfL) and phosphorylated neurofilament heavy chain (pNfH) — two key components of axons (nerve cell extensions responsible for transmitting nerve signals) — show promise as biomarkers ... Read more