The Zeego Tales: Earning the Trust of My Service Dog
“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. It has never been my style to ask for ... Read more
Updates
-
-
Naturally Occurring Mutation in ISCU2 Protein May Bypass Effects of Frataxin Loss, Early Study Suggests
A naturally occurring variant of ISCU2 protein can have the same molecular role as frataxin, an experimental study has found. This discovery may pave the ... Read more -
My Planning Approach Allows Me to Prioritize My Health Needs
I was sitting on a plane yesterday thinking about some of my deadlines when I recognized that I was feeling overwhelmed and exhausted. While ... Read more -
As My Abilities Diminish with FA, My Frustration Grows
When I have an initial conversation with someone about my FA diagnosis, the person almost always asks, “Are you in pain?” At first, I ... Read more -
Rain Won’t Stop Us from Curing FA!
After months of planning and executing, my family’s grassroots event, the 7th Annual Mother’s Day 5K Race for Christina, took place last Sunday, May ... Read more
-
Wishing Away Friedreich’s Ataxia
Friedreich’s ataxia (FA) is a heavy diagnosis. It is a relentlessly cruel progressive disease ... -
Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns
With 250 rare diseases newly identified every year, scientists can barely keep up — ... -
Louisiana FA Community Helps Ease Loneliness
“Is everyone here?” Dr. Grabczyk asked from the head of the table. The old ... -
On FA Awareness Day, Friedreich’s Ataxia Research Advocate Is Upbeat
“Excited and beyond belief” is how Ron Bartek, co-founder and president of the Friedreich’s ... -
On Being a Bridesmaid for a Day
I remember feeling overjoyed and honored a year ago after I received a package ... -
Planning for My Unpredictable Future
“I can’t believe we found this,” I said to my friend Jennifer, holding the ...
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