Never Fear Putting Yourself Out There
This is the final countdown. The big day has finally come. Tomorrow, Saturday, Oct. 20, I am marrying the man of my dreams, Justin. ... Read more
Updates
-
-
I’ve Adopted the Concept of ‘Besides FA’
I recently began participating in a 48-week, Phase 2 clinical trial for Friedreich’s ataxia. The way I understand it, the study’s investigational ... Read more -
Noninvasive Evaluation of Eye’s Nerve Structures Can Help Predict Neurological Damage in FA, Study Finds
A noninvasive assessment of the nerve structures in the superficial membrane of the eye, known as the cornea, can help quantify the severity of ... Read more -
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 -
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 ... -
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 ... -
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 ... -
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 ...
Subscribe to our mailing list
Get regular updates delivered to your email box.
Thanks! Please check your email for a confirmation email.
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