How I Realized I Was Ready to Transition to the Next Assistive Device
I often revisit a memory from eight years ago when my family and I were in a patient room at Johns Hopkins Hospital. I ... Read more
Updates
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Phase 2 Trial of Leriglitazone Ready to Dose Patients After Completing Enrollment Ahead of Schedule
A Phase 2 trial testing leriglitazone as a potential oral treatment for Friedreich’s ataxia (FA) has recruited its target number of participants ahead ... Read more -
The Best Man Gets His Groove On
Being the best man at a wedding had its challenges. I am not comfortable being the center of attention, so it was not relaxing ... Read more -
Focus on Results, Not on Excuses
Once again, this weekly writing exercise is proving to be more beneficial than I ever imagined. In a sense, writing and posting my thoughts ... Read more -
3 Reminders for Living with an Invisible Disease
Living with an invisible disability is not easy. Symptoms that cannot be seen are difficult for outsiders to understand. Friedreich’s ataxia (FA) entails neurological ... Read more
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Depression Significantly Affects Quality Of Life for FA Patients and Requires Intervention, Study Finds
Symptoms of depression significantly affect the quality of life of people with Friedreich’s ataxia ... -
The Zeego Tales: Takeoffs Are Scary!
“The Zeego Tales” track the wonders of my new life with my service dog, ... -
When Good Intentions Aren’t Enough, We Need to Take Action
I’m currently beating myself up a little, mentally speaking. I’m finding it hard to ... -
Federal Lawsuit Targets Philadelphia’s Inaccessible Streets and Sidewalks
I read an article recently in The Philadelphia Inquirer that affected me on a ... -
NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC
Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, ... -
Honoring the Legacy of Serena Lawrence
Serena Lawrence hired me as a columnist for BioNews Services. I badgered my friend ...
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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