August 14, 2020August 7, 2020
Changing Perspectives and Growing Internally After My Diagnosis

One of most difficult aspects of Friedreich’s ataxia (FA) is thinking I don’t deserve any good that comes my way. Being diagnosed with a ... Read more
August 13, 2020August 13, 2020
FDA to Review Confirmatory Trial Proposal for Omaveloxolone

Reata Pharmaceuticals, along with a group of key opinion leaders and the Friedreich’s Ataxia Research Alliance (FARA), have proposed the launch of a ... Read more
August 13, 2020August 13, 2020
When Friedreich’s Ataxia Gives Me the Disabled Blues

Last week, my husband and I decided it was time for a change of scenery from our COVID-19 quarantine in Austin, Texas, and we ... Read more
August 12, 2020August 10, 2020
What ‘Hamilton’ Taught Me About Waiting

I’m not patient. Not at all. I think it’s funny that people with debilitating health conditions often are seen as being patient and tolerant. ... Read more
August 10, 2020August 10, 2020
New Streaming Channel Showcases Rare Disease Films

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a ... Read more

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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

Changing Perspectives and Growing Internally After My Diagnosis

FDA to Review Confirmatory Trial Proposal for Omaveloxolone

When Friedreich’s Ataxia Gives Me the Disabled Blues

What ‘Hamilton’ Taught Me About Waiting

New Streaming Channel Showcases Rare Disease Films

Is the Grass Greener Without Friedreich’s Ataxia?

Partnership Again Supplies Adaptive Cycling Equipment to FA Patients

First I Swim, Then I Drown, Now I Float

Maintaining Abilities With Friedreich’s Ataxia

COMP Recommends CTI-1601 as Orphan Drug for Treating Friedreich’s Ataxia

Even Though My Body Is Failing, I’m Not Hopeless

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Push to Get the Results You Want

I’ve Chosen to Be Intentionally Courageous

Phase 1 Trial of CTI-1601, Lab-made Frataxin, Dosing Final Patient Group

Why I Choose to Use a Wheelchair

Will We Ever Accept FA?

Battling ‘Mobility Envy’ as My FA Symptoms Progress

Blood Levels of 2 Proteins Seen as Possible Measure of Heart Health

Kyle Bryant Announces the First-ever Virtual rideATAXIA Global Challenge

Stay on Point and Avoid Distractions

Seizing What I Can from Life

Extent of Motor Difficulties May Mirror Problems in Cognitive Abilities

Gaining Perspective As I Learn to Tolerate Needles

Reflections on the Joys of Parenting an FA Teen

Growing Bigger Than Friedreich’s Ataxia

Study: Disease Severity, Older Age and Point Mutation Raise Risk of Diabetes in FA

A Vision Test Helped Me See the Need for Self-care

I Can’t Live in the Past, but Can’t Ignore It Either

Gene Editing Seen to Restore Frataxin Level in Cells From Patients

Now Is All We Have, and Sometimes That’s Enough

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Urinary, Bowel, Sexual Symptoms in FA Lead to Lower Quality of Life, Study Reports

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Changing Perspectives and Growing Internally After My Diagnosis

FDA to Review Confirmatory Trial Proposal for Omaveloxolone

When Friedreich’s Ataxia Gives Me the Disabled Blues

What ‘Hamilton’ Taught Me About Waiting

New Streaming Channel Showcases Rare Disease Films

Is the Grass Greener Without Friedreich’s Ataxia?

Partnership Again Supplies Adaptive Cycling Equipment to FA Patients

First I Swim, Then I Drown, Now I Float

Maintaining Abilities With Friedreich’s Ataxia

COMP Recommends CTI-1601 as Orphan Drug for Treating Friedreich’s Ataxia

Even Though My Body Is Failing, I’m Not Hopeless

Subscribe to our mailing list

Push to Get the Results You Want

I’ve Chosen to Be Intentionally Courageous

Phase 1 Trial of CTI-1601, Lab-made Frataxin, Dosing Final Patient Group

Why I Choose to Use a Wheelchair

Will We Ever Accept FA?

Battling ‘Mobility Envy’ as My FA Symptoms Progress

Blood Levels of 2 Proteins Seen as Possible Measure of Heart Health

Kyle Bryant Announces the First-ever Virtual rideATAXIA Global Challenge

Stay on Point and Avoid Distractions

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

Seizing What I Can from Life

Extent of Motor Difficulties May Mirror Problems in Cognitive Abilities

Gaining Perspective As I Learn to Tolerate Needles

Reflections on the Joys of Parenting an FA Teen

Growing Bigger Than Friedreich’s Ataxia

Study: Disease Severity, Older Age and Point Mutation Raise Risk of Diabetes in FA

A Vision Test Helped Me See the Need for Self-care

I Can’t Live in the Past, but Can’t Ignore It Either

Behind Closed Doors: Why I Share the Reality of FA

Gene Editing Seen to Restore Frataxin Level in Cells From Patients

Now Is All We Have, and Sometimes That’s Enough

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Urinary, Bowel, Sexual Symptoms in FA Lead to Lower Quality of Life, Study Reports

Pin It on Pinterest