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
November 13, 2019November 13, 2019
I’m Not Finished with Life Yet

When I was 16, I searched the internet for Friedreich’s ataxia (FA) for the first time. I couldn’t ignore its effects any longer, and ... Read more
November 12, 2019November 8, 2019
I Can’t Let Fear Dictate My Next Steps

There is a first time for everything, right? That’s a phrase I often hear and it is true. A baby’s first words, a teenager’s ... Read more
November 8, 2019November 6, 2019
Rediscovering My Passion for Baking

I recently rediscovered my passion for baking. My hopes and dreams should not be put on hold because of Friedreich’s ataxia (FA). I should not ... Read more
November 7, 2019November 7, 2019
Scoliosis Common in FA Children, Spinal Exams Should Be Part of Routine Patient Care, Study Argues

Scoliosis, an abnormal curvature of the spine, is highly prevalent in children with Friedreich’s ataxia (FA), predominantly caused by right-sided thoracic curves and commonly ... Read more
November 6, 2019November 4, 2019
A Perfect Picture: FA Symposium 2019

Is this even worth it? The noisy confusion was almost comical. Luckily, I was next to some friends in a corner of the hotel ... Read more

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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

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 ...
Columns, Little Victories - a Column by Matthew Lafleur

My Little Victories Are Enough for Me
October 30, 2019October 25, 2019
Out of curiosity, I ran an online search of “Kyle Bryant,” one of my ...

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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 ...
Do You Put Off Doctors’ Appointments Due to Anxiety?
October 28, 2019October 24, 2019
Scheduling my own doctors’ appointments was one of the biggest indications I was getting ...
Stay Involved in the FA Community Even When You Can’t Attend an Event
October 25, 2019October 23, 2019
Investigational Oral Treatment Leriglitazone Gains Orphan Drug Status for FA
October 24, 2019October 24, 2019
Phantoms and Flowers: Hades, Persephone, and Hope
October 23, 2019October 21, 2019
A Fractured Hip Has Slowed Me Down but I Can Still See the Silver Lining
October 22, 2019October 18, 2019

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0 out of 5 stars. 0 votes.

‘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 ...
FA Events Give Us a Sense of Community and Belonging
October 18, 2019October 17, 2019
The View from My Standing Frame
October 16, 2019October 14, 2019
The People We Surround Ourselves With Matter
October 15, 2019November 13, 2019

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0 out of 5 stars. 0 votes.

‘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 ...
MOXIe Trial of Omaveloxolone Shows Significant Benefit to FA Patients, Reata Reports
October 15, 2019October 31, 2019
How I Realized I Was Ready to Transition to the Next Assistive Device
October 11, 2019October 9, 2019

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0 out of 5 stars. 0 votes.

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, Little Victories - a Column by Matthew Lafleur

The Best Man Gets His Groove On
October 9, 2019October 4, 2019
Being the best man at a wedding had its challenges. I am not comfortable ...
Columns, No Good Excuse - a Column by Sean Baumstark

Focus on Results, Not on Excuses
October 8, 2019October 4, 2019
Once again, this weekly writing exercise is proving to be more beneficial than I ...
A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

3 Reminders for Living with an Invisible Disease
October 4, 2019October 1, 2019
Living with an invisible disability is not easy. Symptoms that cannot be seen are ...
News

Depression Significantly Affects Quality Of Life for FA Patients and Requires Intervention, Study Finds
October 4, 2019October 4, 2019
Symptoms of depression significantly affect the quality of life of people with Friedreich’s ataxia ...
Columns, Little Victories - a Column by Matthew Lafleur

The Zeego Tales: Takeoffs Are Scary!
October 2, 2019October 23, 2019
“The Zeego Tales” track the wonders of my new life with my service dog, ...
Columns, No Good Excuse - a Column by Sean Baumstark

When Good Intentions Aren’t Enough, We Need to Take Action
October 1, 2019October 23, 2019
I’m currently beating myself up a little, mentally speaking. I’m finding it hard to ...
A Practical Guide to Life with FA - a Column by Christina Cordaro, Columns

Federal Lawsuit Targets Philadelphia’s Inaccessible Streets and Sidewalks
September 27, 2019October 23, 2019
I read an article recently in The Philadelphia Inquirer that affected me on a ...
News

NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC
September 27, 2019October 23, 2019
Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, ...

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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