July 10, 2020July 10, 2020
National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, ... Read more
July 9, 2020July 7, 2020
Seizing What I Can from Life

Friedreich’s ataxia (FA) is a progressively degenerative neurological disease. It targets almost every aspect of my body, especially coordination, balance, dexterity, and energy. My ... Read more
July 9, 2020July 9, 2020
Extent of Motor Difficulties May Mirror Problems in Cognitive Abilities

Poorer motor control associates with greater cognitive difficulties in people with Friedreich’s ataxia (FA), a study from Belgium suggests. Its researchers also indicate that a ... Read more
July 8, 2020July 6, 2020
Gaining Perspective As I Learn to Tolerate Needles

“Forty needles! I think that’s a record over here!” I was lying on my stomach on the adjustable table as my physical therapist said ... Read more
July 6, 2020July 3, 2020
Reflections on the Joys of Parenting an FA Teen

It’s been a while since I have had the courage to write a column. I don’t want to seem melodramatic, but the vulnerability of ... 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

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

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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

Coalition Will Address Racial Disparities in Rare Disease Communities

Choosing Hope Over Fear with Friedreich’s Ataxia

Faster Progression Evident with Disease Onset Before Age 8, Study Shows

Reconciling with My Past, My Self, My Dream

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Endurance Exercise Prevents Symptom Onset in FA Mouse Model, Study Finds

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Investigational Gene Therapy AVXS-401 Shows Promise in Animal Models of FA

Learning to Shift from ‘I’ to ‘We’

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

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

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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

Subscribe to our mailing list

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

Coalition Will Address Racial Disparities in Rare Disease Communities

Choosing Hope Over Fear with Friedreich’s Ataxia

Faster Progression Evident with Disease Onset Before Age 8, Study Shows

Reconciling with My Past, My Self, My Dream

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Instagram vs. Reality with Mobility Aids

Endurance Exercise Prevents Symptom Onset in FA Mouse Model, Study Finds

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Video Games Connect Chronically Ill Children Isolated at Home, Hospital

Investigational Gene Therapy AVXS-401 Shows Promise in Animal Models of FA

Learning to Shift from ‘I’ to ‘We’

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

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

Pin It on Pinterest