September 1, 2020August 28, 2020
Focusing on One Thing at a Time
Columns, No Good Excuse - a Column by Sean Baumstark
I recently wrote about the importance of developing habits and disciplines that will help us move toward particular goals ... Read more
August 27, 2020August 24, 2020
Feeling the 7-Year Itch With Friedreich’s Ataxia
Columns, My Darling Disability - a Column by Kendall Harvey
I was diagnosed with Friedreich’s ataxia (FA) on Aug. 19, 2013. Before that day, I had never even ... 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 ... Read more
August 26, 2020August 24, 2020
Learning to Confront the Mysterious Villains in Our Lives
Columns, Little Victories - a Column by Matthew Lafleur
I’ve been thinking a lot about whodunits lately, those stories with a masked villain who is finally revealed at ... 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 ... Read more
August 24, 2020August 20, 2020
Adopting a Dog While Being Disabled Is All About Adapting
Columns, Fighting FA - a Column by Frankie Perazzola
I recently adopted a mixed beagle and Chihuahua named Albert. He is 10 years old, and I got him ... Read more
August 20, 2020August 18, 2020
Finding the Ideal Life Partner
Columns, My Darling Disability - a Column by Kendall Harvey
When I was a young girl making a list of my “dream guy” qualities, it was probably like everyone ... Read more
August 20, 2020August 20, 2020
Suppressing Two Gene-silencing Enzymes May Hold Promise in FA, Study Shows
News
Simultaneous suppression of two histone methyltransferases (HMTs) significantly increased the activity of the FXN gene in cells derived from ... Read more
August 19, 2020August 14, 2020
When a Rare Disease Treatment Comes Out, but It’s Not for You
Columns, Little Victories - a Column by Matthew Lafleur
Aug. 7 was a big day. Some groundbreaking news came out in the rare disease world: the U.S. Food ... Read more
August 18, 2020August 14, 2020
Small Lessons Can Be Learned by Addressing Big Issues
Columns, No Good Excuse - a Column by Sean Baumstark
The year 2020 will mark stories of history for generations to come. This year continues to call attention to ... Read more
August 17, 2020August 17, 2020
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
News, syndicated
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare ... Read more
August 14, 2020August 7, 2020
Changing Perspectives and Growing Internally After My Diagnosis
Columns, Fighting FA - a Column by Frankie Perazzola
One of most difficult aspects of Friedreich’s ataxia (FA) is thinking I don’t deserve any good that comes my ... Read more

September 1, 2020August 28, 2020

Focusing on One Thing at a Time

Columns, No Good Excuse - a Column by Sean Baumstark

I recently wrote about the importance of developing habits and disciplines that will help us move toward particular goals and objectives. Although that isn’t a new or jaw-dropping concept, ... Read more

August 27, 2020August 24, 2020

Feeling the 7-Year Itch With Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

I was diagnosed with Friedreich’s ataxia (FA) on Aug. 19, 2013. Before that day, I had never even heard of FA, let alone expected to think about this progressive, ... 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 26, 2020August 24, 2020

Learning to Confront the Mysterious Villains in Our Lives

Columns, Little Victories - a Column by Matthew Lafleur

I’ve been thinking a lot about whodunits lately, those stories with a masked villain who is finally revealed at the end of the tale. From slasher flicks to “Scooby-Doo” ... 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

August 24, 2020August 20, 2020

Adopting a Dog While Being Disabled Is All About Adapting

Columns, Fighting FA - a Column by Frankie Perazzola

I recently adopted a mixed beagle and Chihuahua named Albert. He is 10 years old, and I got him from a local animal care organization. During the process of ... Read more

August 20, 2020August 18, 2020

Finding the Ideal Life Partner

Columns, My Darling Disability - a Column by Kendall Harvey

When I was a young girl making a list of my “dream guy” qualities, it was probably like everyone else’s. I wanted him to be kind, handsome, smart, funny, ... Read more

August 20, 2020August 20, 2020

Suppressing Two Gene-silencing Enzymes May Hold Promise in FA, Study Shows

News

Simultaneous suppression of two histone methyltransferases (HMTs) significantly increased the activity of the FXN gene in cells derived from people with Friedreich’s ataxia (FA) and in a mouse model of ... Read more

August 19, 2020August 14, 2020

When a Rare Disease Treatment Comes Out, but It’s Not for You

Columns, Little Victories - a Column by Matthew Lafleur

Aug. 7 was a big day. Some groundbreaking news came out in the rare disease world: the U.S. Food and Drug Administration approved a new treatment for spinal muscular ... Read more

August 18, 2020August 14, 2020

Small Lessons Can Be Learned by Addressing Big Issues

Columns, No Good Excuse - a Column by Sean Baumstark

The year 2020 will mark stories of history for generations to come. This year continues to call attention to areas of opportunity, shortcomings, and perhaps failures across many areas ... Read more

August 17, 2020August 17, 2020

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

News, syndicated

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. ... Read more

August 14, 2020August 7, 2020

Changing Perspectives and Growing Internally After My Diagnosis

Columns, Fighting FA - a Column by Frankie Perazzola

One of most difficult aspects of Friedreich’s ataxia (FA) is thinking I don’t deserve any good that comes my way. Being diagnosed with a progressive illness convinced my brain ... Read more