The Mother of Vacation Origins
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 ... Read more
Updates
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Serious Games Can Be Used to Assess Motor Function in Advanced FA Patients, Study Shows
Serious games (SG) — video games designed with a primary purpose other than pure entertainment — are a reliable assessment tool for motor function in patients ... Read more -
How Friedreich’s Ataxia Brought Me Closer to My Faith
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 ... Read more -
Fly Study Identifies Two Medications That May Be Cardioprotective for FA Patients
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) ... Read more -
Reflections on My Vacation to Turks and Caicos: Traveling Ain’t So Easy Anymore, Thanks to FA
First in a series of reflections on a recent vacation to an amazing resort on Providenciales island in Turks and Caicos. In the cramped ... Read more
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Advocacy Groups, Doctors Question Rising Prices of Rare Disease Treatments
Half a year has gone by since disgraced pharma executive Martin Shkreli was sentenced ... -
6 Tips to Prepare for rideATAXIA, the Big Bike Ride
Sweaty palms, excitement, hope, and motivation — I’m preparing to be in position at the ... -
Learning to Live in the Present
“What’s next for me?” I remember asking my friend, sitting across the table from ... -
Before Dining Out, We Do Our Research
Recently, I saw the following quote shared on social media. It stands out, particularly ... -
New to Friedreich’s Ataxia?
The first time I ever heard of Friedreich’s ataxia was the day I was ... -
The Algebra of Dating with FA: The Ex and the Why
“I get him, and he gets me,” Cassandra states as if it’s obvious. Her ...
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Urinary, Bowel, Sexual Symptoms in FA Lead to Lower Quality of Life, Study Reports
News
Many Friedreich’s ataxia patients experience urinary tract symptoms, bowel problems, and sexual dysfunction, which leads to a lower quality of life, research shows. The study, “Urinary, bowel and sexual symptoms in a cohort of patients with Friedreich’s ataxia,” was ... Read more