October 17, 2018October 16, 2018
The Mother of Vacation Origins
Columns, Little Victories - a Column by Matthew Lafleur
In this reflection on a vacation to the Turks and Caicos Islands, I discuss the purpose of my trip: my ... Read more
October 16, 2018October 16, 2018
Serious Games Can Be Used to Assess Motor Function in Advanced FA Patients, Study Shows
News
Serious games (SG) — video games designed with a primary purpose other than pure entertainment — are a reliable assessment tool ... Read more
October 12, 2018October 11, 2018
How Friedreich’s Ataxia Brought Me Closer to My Faith
A Practical Guide to Life with FA - a Column by Christina Logan, Columns
My family and I have always been religious, with strong beliefs, faith, and morals. My mother is Catholic and raised ... Read more
October 11, 2018October 11, 2018
Fly Study Identifies Two Medications That May Be Cardioprotective for FA Patients
News
Pharmacological screening in a fly cardiac model of Friedreich’s ataxia (FA) identified 11 potentially protective compounds. The two ... Read more
October 10, 2018October 9, 2018
Reflections on My Vacation to Turks and Caicos: Traveling Ain’t So Easy Anymore, Thanks to FA
Columns, Little Victories - a Column by Matthew Lafleur
First in a series of reflections on a recent vacation to an amazing resort on Providenciales island in Turks ... Read more
October 9, 2018
Advocacy Groups, Doctors Question Rising Prices of Rare Disease Treatments
News
Half a year has gone by since disgraced pharma executive Martin Shkreli was sentenced to seven years in federal ... Read more
October 5, 2018October 4, 2018
6 Tips to Prepare for rideATAXIA, the Big Bike Ride
A Practical Guide to Life with FA - a Column by Christina Logan, Columns
Sweaty palms, excitement, hope, and motivation — I’m preparing to be in position at the starting line at the rideATAXIA ... Read more
October 3, 2018October 1, 2018
Learning to Live in the Present
Columns, Little Victories - a Column by Matthew Lafleur
“What’s next for me?” I remember asking my friend, sitting across the table from me at a popular and ... Read more
September 28, 2018September 27, 2018
Before Dining Out, We Do Our Research
A Practical Guide to Life with FA - a Column by Christina Logan, Columns
Recently, I saw the following quote shared on social media. It stands out, particularly when I am making plans ... Read more
September 27, 2018September 25, 2018
New to Friedreich’s Ataxia?
Columns, My Darling Disability - a Column by Kendall Harvey
The first time I ever heard of Friedreich’s ataxia was the day I was diagnosed with the disease in ... Read more
September 26, 2018September 25, 2018
The Algebra of Dating with FA: The Ex and the Why
Columns, Little Victories - a Column by Matthew Lafleur
“I get him, and he gets me,” Cassandra states as if it’s obvious. Her boyfriend Roland can be seen ... Read more
September 24, 2018September 20, 2018
A Letter to My Endlessly Loving Mother
Columns, Fighting FA - a Column by Frankie Perazzola
Dearest Mom, I wrote this a long time ago, but I wanted to wait for a random day to ... Read more

October 17, 2018October 16, 2018

The Mother of Vacation Origins

Columns, Little Victories - a Column by Matthew Lafleur

In this reflection on a vacation to the Turks and Caicos Islands, I discuss the purpose of my trip: my incredible mom. Check out my earlier thoughts on traveling with ... Read more

October 16, 2018October 16, 2018

Serious Games Can Be Used to Assess Motor Function in Advanced FA Patients, Study Shows

News

Serious games (SG) — video games designed with a primary purpose other than pure entertainment — are a reliable assessment tool for motor function in patients with advanced Friedreich’s ataxia (FA). This ... Read more

October 12, 2018October 11, 2018

How Friedreich’s Ataxia Brought Me Closer to My Faith

A Practical Guide to Life with FA - a Column by Christina Logan, Columns

My family and I have always been religious, with strong beliefs, faith, and morals. My mother is Catholic and raised my sister as such. My father, an Episcopalian, raised my ... Read more

October 11, 2018October 11, 2018

Fly Study Identifies Two Medications That May Be Cardioprotective for FA Patients

News

Pharmacological screening in a fly cardiac model of Friedreich’s ataxia (FA) identified 11 potentially protective compounds. The two most promising are the anti-inflammatory Azulfidine (sulfasalazine) and the antidepressant Luvox (fluvoxamine), according to the ... Read more

October 10, 2018October 9, 2018

Reflections on My Vacation to Turks and Caicos: Traveling Ain’t So Easy Anymore, Thanks to FA

Columns, Little Victories - a Column by Matthew Lafleur

First in a series of reflections on a recent vacation to an amazing resort on Providenciales island in Turks and Caicos. In the cramped seat of the plane, nothing ... Read more

October 9, 2018

Advocacy Groups, Doctors Question Rising Prices of Rare Disease Treatments

News

Half a year has gone by since disgraced pharma executive Martin Shkreli was sentenced to seven years in federal prison for securities and wire fraud while heading San Diego-based ... Read more

October 5, 2018October 4, 2018

6 Tips to Prepare for rideATAXIA, the Big Bike Ride

A Practical Guide to Life with FA - a Column by Christina Logan, Columns

Sweaty palms, excitement, hope, and motivation — I’m preparing to be in position at the starting line at the rideATAXIA Philly event. The annual bike ride takes place in Southern ... Read more

October 3, 2018October 1, 2018

Learning to Live in the Present

Columns, Little Victories - a Column by Matthew Lafleur

“What’s next for me?” I remember asking my friend, sitting across the table from me at a popular and kitschy restaurant. My friend was used to me being melodramatic; ... Read more

September 28, 2018September 27, 2018

Before Dining Out, We Do Our Research

A Practical Guide to Life with FA - a Column by Christina Logan, Columns

Recently, I saw the following quote shared on social media. It stands out, particularly when I am making plans to go to various public places. “Ramps should be the standard. ... Read more

September 27, 2018September 25, 2018

New to Friedreich’s Ataxia?

Columns, My Darling Disability - a Column by Kendall Harvey

The first time I ever heard of Friedreich’s ataxia was the day I was diagnosed with the disease in 2013 at the age of 25. To say I was ... Read more

September 26, 2018September 25, 2018

The Algebra of Dating with FA: The Ex and the Why

Columns, Little Victories - a Column by Matthew Lafleur

“I get him, and he gets me,” Cassandra states as if it’s obvious. Her boyfriend Roland can be seen in the background of this shot, acting goofy and dancing ... Read more

September 24, 2018September 20, 2018

A Letter to My Endlessly Loving Mother

Columns, Fighting FA - a Column by Frankie Perazzola

Dearest Mom, I wrote this a long time ago, but I wanted to wait for a random day to show my appreciation. Not your birthday, not Mother’s Day — ... Read more