October 21, 2020October 19, 2020
The Half-life of a Bradford Pear Tree

Many trees stand stoically on my family’s property, one of which I pass each time I ride my recumbent trike. I take notice of ... Read more
October 20, 2020October 20, 2020
Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its ... Read more
October 19, 2020October 15, 2020
A Realistic Approach to Fitness With Friedreich’s Ataxia

Because I’m transparent about my life journey with Friedreich’s ataxia (FA), questions about my approach to fitness are inevitable. Some may think it’s ego-driven ... Read more
October 15, 2020October 13, 2020
After Quarantine, I Am ‘the Disabled Mom’ Again

Given all of the uncertainty and unpredictability in the world, it is fairly safe to say that nearly everyone has had moments of frustration, ... Read more
October 15, 2020October 15, 2020
Ataxia UK Funds Work Into Compounds to Replace or Enhance Frataxin in Cells

Ataxia UK has awarded a £26,000 grant to advance research into compounds that can replace or boost the activity of frataxin, the protein that is ... 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

The Half-life of a Bradford Pear Tree

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

A Realistic Approach to Fitness With Friedreich’s Ataxia

After Quarantine, I Am ‘the Disabled Mom’ Again

Ataxia UK Funds Work Into Compounds to Replace or Enhance Frataxin in Cells

A Heart Like a Rabbit

A Meaningful Life Requires Intentional Time

Let’s ‘Walk and Roll’ With Our Mobility Devices

IXICO Joins Consortium to Develop New Imaging Markers for FA

A Functioning Mind in a Malfunctioning Body

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

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What I Would Tell Someone Newly Diagnosed With FA

In the Battle With Friedreich’s Ataxia, We’re Both Relentless

A Call for FA Patients to Join Global Registry to Advance Knowledge, Treatments

Alternative Treatments for Friedreich’s Ataxia: Cupping and Me

Connecting With Others Helps Us Move Forward

I Have a Strange Relationship With Adrenaline

‘Behind the Mystery: Rare and Genetic’ TV Show Brings Focus to FA Challenges

Is Friedreich’s Ataxia a Form of Muscular Dystrophy?

Acting Together to Cure Friedreich’s Ataxia

High Levels of Frataxin After Gene Therapy Caused Heart Problems in Mice

Moving Past Unrequited Love

Using Our Voices to Aid Research and Prompt Change

Reflecting on My Life Before FA

Broad Institute Launches Accelerator Initiative to Study Friedreich’s Ataxia

If These Wheels Could Talk

Growing Into Life With a Disability

Informing Children About Friedreich’s Ataxia

Natural Antioxidant Improves Heart Function in FA, Small Study Shows

Hurricane Laura Barely Missed Me

Same But Different Photo Contest Celebrates People With Rare Diseases

Focusing on One Thing at a Time

Feeling the 7-Year Itch With Friedreich’s Ataxia

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

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