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
January 24, 2020January 22, 2020
6 Ways to Stay Active During the Winter

Have a case of the winter blues? Cold weather can make anyone want to hibernate under a warm blanket and never leave home. When ... Read more
January 23, 2020January 23, 2020
Retrotope Doses First Patient with RT001, Friedreich’s Ataxia Investigational Therapy

Retrotope has dosed the first patient with RT001, an experimental oral treatment for Friedreich’s ataxia (FA), in a Phase 2/3 clinical trial currently ... Read more
January 22, 2020January 21, 2020
Surrounded by Heroes in Philadelphia

I looked around and grinned. Our individual values are upheld by the people with whom we surround ourselves, and that made it incredible to ... Read more
January 21, 2020January 17, 2020
Practice Prepares Us to Be Better

I recently wrote a column about trying something new, and I challenged readers and myself to get out of our comfort zones. I’ve been ... Read more
January 20, 2020January 16, 2020
FA Is Taking Away My Ability to Write

Being a writer without the ability to write is a conundrum. I think about it often, especially when I write these columns. I never ... 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 ...
A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

We Have Much to Consider When Growing Our Family
January 17, 2020January 15, 2020
Marriage is wonderful, but it comes with challenges. When one partner has Friedreich’s ataxia ...
News

MDA Awards $1M to AavantiBio for Gene Therapy Development in FA
January 16, 2020January 16, 2020
The Muscular Dystrophy Association (MDA) has awarded AavantiBio $1,076,232 to advance the biotechnology company’s ...
Columns, Little Victories - a Column by Matthew Lafleur

A Scar that Exposed My Worth
January 15, 2020January 22, 2020
Before I knew it, I was face down on the tiled floor. When I ...
Columns, No Good Excuse - a Column by Sean Baumstark

The Bare Minimum: Don’t Stop There
January 14, 2020January 10, 2020
I’ve been thinking about the “bare minimum” in the context of guest or customer ...
Columns, Fighting FA - a Column by Frankie Perazzola

I Learned a Big Lesson from the Tiniest of People
January 13, 2020January 9, 2020
We made it! A new decade is here, and the atmosphere seems a little ...

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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 ...
Natural DNA-Replication Mechanism May Help Fix Genetic Defect in FA, Study Suggests
January 9, 2020January 9, 2020
A natural genetic mechanism may help reverse the genetic defect within the FXN gene — excessive ...
The Sound of Forgiveness
January 8, 2020January 6, 2020
Words Matter, So Speak Carefully
January 7, 2020January 3, 2020
Sticking to New Year’s Resolutions
January 6, 2020January 2, 2020
A New Year Creates New Opportunities
January 3, 2020December 19, 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 ...
A Guide to Managing Stress During the Holiday Season
December 20, 2019December 18, 2019
Phase 1 Trial Testing Chondrial’s Potential FA Therapy, CTI-1601, Starts Dosing Patients
December 19, 2019December 19, 2019
2019: A Year of Little Victories
December 18, 2019December 16, 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 ...
Showing Gratitude for My Loved Ones
December 13, 2019December 11, 2019
Much Work Needed to Assess and Treat Speech Difficulties in Friedreich’s Ataxia, Study Says
December 12, 2019December 12, 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 ...
News

Gene Therapy Takes Center Stage at 2019 NORD Summit
December 11, 2019December 11, 2019
With so much recent publicity surrounding gene therapy, it’s no surprise that the topic ...
Columns, No Good Excuse - a Column by Sean Baumstark

How Do You Approach Friction?
December 10, 2019December 6, 2019
I’ve been contemplating a metaphor of sorts, inspired by festivities of my family’s holiday ...
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, 2019January 15, 2020
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, 2019January 15, 2020
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, 2019January 15, 2020
Seelos Therapeutics received a Notice of Allowance from the U.S. Patent and Trademark Office (USPTO) covering the ...
Columns, Little Victories - a Column by Matthew Lafleur

I’m Learning Compassion for My Ataxic Self
December 4, 2019December 2, 2019
It was a good day at physical therapy. I was exhausted from doing ...

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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