July 30, 2020July 28, 2020
Maintaining Abilities With Friedreich’s Ataxia

With Friedreich’s ataxia (FA), I am used to the reality that my abilities are progressively deteriorating. I am losing coordination, dexterity, cellular energy, ... Read more
July 30, 2020July 30, 2020
COMP Recommends CTI-1601 as Orphan Drug for Treating Friedreich’s Ataxia

The Committee for Orphan Medicinal Products (COMP), an arm of the European Medicines Agency (EMA), has issued a positive opinion about granting orphan drug status to ... Read more
July 29, 2020July 27, 2020
Even Though My Body Is Failing, I’m Not Hopeless

“Well look at that,” the doctor remarked, obviously impressed. The wonder in his voice made me grin a little bit. Any positive physical change ... Read more
July 28, 2020July 24, 2020
Push to Get the Results You Want

I’m confident we can all agree: We have no idea what tomorrow may hold. Whether we are talking about the stock market, our individual ... Read more
July 23, 2020July 21, 2020
I’ve Chosen to Be Intentionally Courageous

Friederich’s ataxia (FA) has taught me a lot about intentionality. As an FA patient, I must be intentional both physically and emotionally to function ... 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

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

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

Subscribe to our mailing list

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

Questions for a Future Personal Trainer With a Neuromuscular Disease

How I’ve Adapted to Being Disabled in an Able-bodied World

Neurofilament Light Chain May Be Biomarker of FA Severity in Younger Patients

Rolling Toward Empathy

I’m Kicking My Health Education Into Hyperdrive

Fairy Tales, Dreams, and a Cure for FA

Larimar Therapeutics Created Out of Merger, Will Advance Frataxin Therapy

I’m Confident rideATAXIA Dallas Will Happen in November

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

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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

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

Subscribe to our mailing list

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

Questions for a Future Personal Trainer With a Neuromuscular Disease

How I’ve Adapted to Being Disabled in an Able-bodied World

Neurofilament Light Chain May Be Biomarker of FA Severity in Younger Patients

Rolling Toward Empathy

I’m Kicking My Health Education Into Hyperdrive

Fairy Tales, Dreams, and a Cure for FA

Larimar Therapeutics Created Out of Merger, Will Advance Frataxin Therapy

I’m Confident rideATAXIA Dallas Will Happen in November

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

Pin It on Pinterest