Updates

October 18, 2019November 13, 2019
‘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 first approved targeted treatment for Friedreich’s ataxia (FA), succeeded ... Read more
December 13, 2019December 11, 2019
Showing Gratitude for My Loved Ones

Since my diagnosis with Friedreich’s ataxia (FA), I have learned something about myself. I realize that when making plans, I must consider my needs, ... Read more
December 12, 2019December 12, 2019
Much Work Needed to Assess and Treat Speech Difficulties in Friedreich’s Ataxia, Study Says

Speech disorders like dysarthria are a common and disabling symptom of Friedreich’s ataxia (FA), but they are largely ignored in clinical trials. More research is needed to ... Read more
December 11, 2019December 9, 2019
The Zeego Tales: Zeego Come Home!

“The Zeego Tales” track the wonders of my life with my service dog, Zeego. The day Zeego decided to make a break for it, ... Read more
December 11, 2019December 11, 2019
Gene Therapy Takes Center Stage at 2019 NORD Summit

With so much recent publicity surrounding gene therapy, it’s no surprise that the topic was a major focus of the recent 2019 NORD Rare ... Read more
December 10, 2019December 6, 2019
How Do You Approach Friction?

I’ve been contemplating a metaphor of sorts, inspired by festivities of my family’s holiday traditions. I’m not sure if this is a thought process ... Read more

News

‘Lot of Groundwork’ Behind MOXIe Trial’s Strong Results, Reata Executives Say in Interview
October 18, 2019November 13, 2019
MOXIe, the Phase 2 study of oral omaveloxolone that may prove pivotal to it becoming the ...
Candy Shell Life - a Column by Lauryn Smith, Columns

I’ve Gone Through the Five Stages of Grief as an FA Parent
December 9, 2019December 5, 2019
According to authors Elisabeth Kübler-Ross and David Kessler, people go through five stages of ...
A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

This Year, I Am Thankful for Friedreich’s Ataxia
December 6, 2019December 4, 2019
Every fall, I find myself being thankful for my family and friends and hoping ...
News

HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases
December 5, 2019December 5, 2019
Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or ...
Columns, My Darling Disability - a Column by Kendall Harvey

Navigating the Holidays with Friedreich’s Ataxia
December 5, 2019December 2, 2019
Christmas is always my favorite time of year. The holiday season is a busy ...
News

Seelos Therapeutics Gets US Patent Protection Covering Investigational SLS-005 for Neurodegenerative Diseases
December 5, 2019December 5, 2019
Seelos Therapeutics received a Notice of Allowance from the U.S. Patent and Trademark Office (USPTO) covering the ...

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‘Lot of Groundwork’ Behind MOXIe Trial’s Strong Results, Reata Executives Say in Interview
October 18, 2019November 13, 2019
MOXIe, the Phase 2 study of oral omaveloxolone that may prove pivotal to it becoming the ...
Experts Barry Byrne, Jerry Mendell Lead NORD Webinar on Gene Therapy
December 3, 2019December 3, 2019
A glance around the walls of Barry J. Byrne’s office reveals a lot about ...
I’m Done with Making Myself Feel Bad
December 2, 2019November 26, 2019
Losing the Puzzle, Winning the Game
November 27, 2019November 22, 2019
I’m (Mostly) Thankful for Friedreich’s Ataxia
November 26, 2019November 22, 2019
The Time Was Right for My Own Wheelchair
November 22, 2019November 20, 2019

‘Lot of Groundwork’ Behind MOXIe Trial’s Strong Results, Reata Executives Say in Interview
October 18, 2019November 13, 2019
MOXIe, the Phase 2 study of oral omaveloxolone that may prove pivotal to it becoming the ...
The Zeego Tales: Letting the Light In
November 20, 2019November 18, 2019
I’m Grateful for My FAmily
November 19, 2019November 15, 2019
I Went to Italy and Left My Anxiety at Home
November 18, 2019November 14, 2019

‘Lot of Groundwork’ Behind MOXIe Trial’s Strong Results, Reata Executives Say in Interview
October 18, 2019November 13, 2019
MOXIe, the Phase 2 study of oral omaveloxolone that may prove pivotal to it becoming the ...
Rare Disease Film Festival Highlights Patient and Researcher Unity
November 14, 2019
Leriglitazone Earns European Commission’s Orphan Drug Designation for FA
November 14, 2019November 14, 2019

News

‘Lot of Groundwork’ Behind MOXIe Trial’s Strong Results, Reata Executives Say in Interview
October 18, 2019November 13, 2019
MOXIe, the Phase 2 study of oral omaveloxolone that may prove pivotal to it becoming the ...
Columns, No Good Excuse - a Column by Sean Baumstark

I Can’t Let Fear Dictate My Next Steps
November 12, 2019November 8, 2019
There is a first time for everything, right? That’s a phrase I often hear ...
A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

Rediscovering My Passion for Baking
November 8, 2019November 6, 2019
I recently rediscovered my passion for baking. My hopes and dreams should not be ...
News

Scoliosis Common in FA Children, Spinal Exams Should Be Part of Routine Patient Care, Study Argues
November 7, 2019November 7, 2019
Scoliosis, an abnormal curvature of the spine, is highly prevalent in children with Friedreich’s ...
Columns, Little Victories - a Column by Matthew Lafleur

A Perfect Picture: FA Symposium 2019
November 6, 2019November 4, 2019
Is this even worth it? The noisy confusion was almost comical. Luckily, I was ...
Columns, No Good Excuse - a Column by Sean Baumstark

Stubbornness Is Dangerously Close to Determination
November 5, 2019November 1, 2019
The difference between determination and stubbornness is becoming more and more clear. With the ...
Columns, Fighting FA - a Column by Frankie Perazzola

Would I Recommend Traveling to Italy with FA?
November 4, 2019October 31, 2019
My family and I recently took an incredible vacation to our motherland, Italy. We ...
A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

Bucket List Means More When Living with FA
November 1, 2019October 30, 2019
My passion for the hospitality and tourism industry has shaped my bucket list. I ...
News

Reactivating Nrf2 Pathway Restores Nerve Cell Development in FA, Mouse Study Suggests
October 31, 2019October 31, 2019
Reactivativation of the Nrf2 pathway, which is impaired in the nerve cells — or ...

October 5, 2017February 20, 2019

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

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