Updates
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MOXIe, the Phase 2 study of oral omaveloxolone that may prove pivotal to it becoming the first approved targeted treatment for Friedreich’s ataxia (FA), succeeded ... Read more
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This Year, I Am Thankful for Friedreich’s Ataxia
Every fall, I find myself being thankful for my family and friends and hoping that they are in good health. I am also grateful ... Read more -
HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases
Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or so Americans with rare diseases and ensuring timely, affordable access ... Read more -
Navigating the Holidays with Friedreich’s Ataxia
Christmas is always my favorite time of year. The holiday season is a busy time filled with traditions, but in my memories, December is ... Read more -
Seelos Therapeutics Gets US Patent Protection Covering Investigational SLS-005 for Neurodegenerative Diseases
Seelos Therapeutics received a Notice of Allowance from the U.S. Patent and Trademark Office (USPTO) covering the parenteral, or non-oral administration of SLS-005 (trehalose) for the treatment of ... Read more -
I’m Learning Compassion for My Ataxic Self
It was a good day at physical therapy. I was exhausted from doing leg, arm, and back stretches with the help of my ... Read more
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‘Lot of Groundwork’ Behind MOXIe Trial’s Strong Results, Reata Executives Say in Interview
MOXIe, the Phase 2 study of oral omaveloxolone that may prove pivotal to it becoming the ... -
I’m Done with Making Myself Feel Bad
It has always been a challenge for me to remain in the present. I ... -
Losing the Puzzle, Winning the Game
I took off the hood that blacked out my vision and covered my face. ... -
I’m (Mostly) Thankful for Friedreich’s Ataxia
I recently wrote about my gratitude for the people I’ve been privileged to meet ... -
The Time Was Right for My Own Wheelchair
“It is time,” I thought to myself. A number of loved ones had presented ...
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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