Ataxia

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I’ve Learned to Face My Reality While Hoping for an FA Cure – Friedreich’s Ataxia News

I’ve been down this road before and it doesn’t end up anywhere good. Following that thought, I swallowed…

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Being confined to a wheelchair has not stopped this Leicester globetrotter from visiting 35 countries – Leicestershire Live

Wanderlust is a strange and powerful impulse, and one that’s driven many a restless young Brit over…

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An FAer’s Reflection on Rare Disease Day – Friedreich’s Ataxia News

The theater was packed. It was unseasonably warm for February in Washington, D.C., and my Cajun blood…

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Alone We Are Rare, but Together We Are Strong – Friedreich’s Ataxia News

People around the world observed Rare Disease Day on Thursday, which gives patients, caregivers, and advocates the…

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Becoming Dependent Restored My Independence – Friedreich’s Ataxia News

One of the scariest life changes a patient anticipates upon receiving a diagnosis of Friedreich’s ataxia is…

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Cellular Therapy heals rare neurological disease Friedrich’s Ataxia – Daily Pioneer

Dr Pradeep Mahajan, regenerative medicine researcher, Adigos Stem Cells, Mumbai treated Mangal Swarnkar from Jharkhand who was…

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The Hopes and Risks of Starting a Friedreich’s Ataxia Clinical Trial – Friedreich’s Ataxia News

When diagnosed with Friedreich’s ataxia, the first things people usually ask are: “What can I do about…

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Managing Fatigue in the Workplace – Friedreich’s Ataxia News

In a given week, a full-time employee can work five days and 40 hours or more. With…

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Pioneering study could offer sun protection to patients with rare genetic disease – University of Bath

Skin cells taken from patients with a rare genetic disorder are up to ten times more sensitive…

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Respecting My Body Despite Friedreich’s Ataxia – Friedreich’s Ataxia News

I may not like my body, but I respect it. I often find myself explaining what I mean…

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Iron-induced Cell Death May Play Key Role in FA, Study Suggests – Friedreich’s Ataxia News

Iron-induced cell death may contribute to the progression of Friedreich’s ataxia, a study in human and mice…

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The Anchor on My Wheelchair from My Steadfast FA Friend – Friedreich’s Ataxia News

A small wooden trinket hangs on the back of my wheelchair. It’s a navy blue anchor with…

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The Power Behind the Friedreich’s Ataxia Patient Registry – Friedreich’s Ataxia News

Last month, I attended a PTC Therapeutics meeting with two other Friedreich’s ataxia patients named Kyle Bryant…

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Sometimes with Friedreich’s Ataxia, I’d Prefer to Be Invisible – Friedreich’s Ataxia News

Sometimes we prefer not to be seen. I know how that feels. Growing up, I loved being…

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Similarities in Parenting and Friedreich’s Ataxia – Friedreich’s Ataxia News

At first, I resented having Friedreich’s ataxia (FA) because it hasn’t allowed me to be the mom…

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Setting a New Trend with Adaptive Wear – Friedreich’s Ataxia News

Everyone has a morning routine, a plan that sets the mood for the day. Most people become…

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I’m Right Where I’m Supposed to Be – Friedreich’s Ataxia News

This isn’t where I’m supposed to be, I thought. My power wheelchair’s mechanic whine echoed through the…

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A Friedreich’s Ataxia Explainer: Genetic Cause, Symptoms, and Progression – Friedreich’s Ataxia News

Describing a progressive genetic disease like Friedreich’s ataxia (FA) is difficult. It has a wide range of…

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Correcting Just Half the Heart Muscle Cells Fully Restores Cardiac Function in Friedreich’s Ataxia Mice – Friedreich’s Ataxia News

A gene therapy approach to increase the amount of the critical frataxin protein shows that correcting only…

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‘Bird Box’ Is Worth the Hype, Especially for the Disabled – Friedreich’s Ataxia News

Spoiler alert: In this column, I’ll review the popular Netflix movie “Bird Box.” I explore the movie’s…

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New Year, New Beginnings – Friedreich’s Ataxia News

An approaching new year means multiple things to different people. A new year can mean starting over…

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A New Year’s Resolution I Can Keep – Friedreich’s Ataxia News

“What’s your resolution?” This time of year, redefinition is almost a buzzword. Resolutions and goals are a hailstorm…

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Surviving the In-between Moments – Friedreich’s Ataxia News

On any typical day at my middle school, the closer you were to the bench, the higher…

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Introversion as an Excuse – Friedreich’s Ataxia News

Sometimes I use my introversion as an excuse. It’s safe and secure; it’s familiar not to expose…

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Answering the Questions Friends Ask Most Often About My Friedreich’s Ataxia – Friedreich’s Ataxia News

Over the past couple of weeks, I’ve had some good conversations with FAers and others about life….

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I Apologize for Going Dark – Friedreich’s Ataxia News

Do you ever experience times when being social in any form is out of the question? When…

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Finding Reasons to Stay Alive – Friedreich’s Ataxia News

Drowsily and with great effort, I hoisted the top half of my body upright in the hotel…

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My Journey to a Friedreich’s Ataxia Diagnosis, Part 3 – Friedreich’s Ataxia News

Third and final in a series. In a previous column, I discussed the tests I underwent to…

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A Physical Therapist Shares Her Perspective on Working with FA Patients – Friedreich’s Ataxia News

I have been working with my physical therapist, Kelli, for a year and a half. She is…

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Answering the Questions Friends Ask Most Often About My Friedreich’s Ataxia – Friedreich’s Ataxia News

Over the past couple of weeks, I’ve had some good conversations with FAers and others about life….

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4 Tips for Preparing to Attend a Football Game – Friedreich’s Ataxia News

Navigating huge crowds at major events can cause great anxiety. For example, going to an arena concert…

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10 Lessons I’ve Learned from Having FA – Friedreich’s Ataxia News

It’s funny how cliches about life have started to make sense to me. From my observations of…

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Don’t Let Fear of Missing Out Spoil Your Trip – Friedreich’s Ataxia News

My husband Justin and I returned last week from our honeymoon in the Bahamas following our beautiful…

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Vibration Device Fails to Halt Motor Deterioration in Children with Friedreich’s Ataxia, Small Study Shows – Friedreich’s Ataxia News

Muscle stimulation through focal vibrations produced by a specialized device may prevent further deterioration of motor function…

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The Caribbean Was the Perfect Spot to Set Aside My Fierce Independence – Friedreich’s Ataxia News

“Are you OK up here?” my stepdad asked, coming upstairs from the galley. “Yeah, I’m fine,” I said,…

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Serious Games Can Be Used to Assess Motor Function in Advanced FA Patients, Study Shows – Friedreich’s Ataxia News

Serious games (SG) — video games designed with a primary purpose other than pure entertainment — are…

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6 Tips to Prepare for rideATAXIA, the Big Bike Ride – Friedreich’s Ataxia News

Sweaty palms, excitement, hope, and motivation — I’m preparing to be in position at the starting line…

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New to Friedreich’s Ataxia? Some Advice for the Newly Diagnosed – Friedreich’s Ataxia News

The first time I ever heard of Friedreich’s ataxia was the day I was diagnosed with the…

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A Letter to My Endlessly Loving Mother – Friedreich’s Ataxia News

Dearest Mom, I wrote this a long time ago, but I wanted to wait for a random day…

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I’m Not Yet Sure How to Fight My Fatigue – Friedreich’s Ataxia News

Friedreich’s ataxia causes a wide array of symptoms. Every FA patient experiences the disease differently. For me,…

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In Case of Emergency, Don’t Have a Disability – Friedreich’s Ataxia News

It wasn’t until a fire alarm at my hotel this past weekend that I realized the complete…

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Daydreaming and Other Ways of Coping – Friedreich’s Ataxia News

“Matt?” my professor repeated for who knows how many times, interrupting the imaginary concert in my head. I…

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Don’t Judge Yourself for Needing Help – Friedreich’s Ataxia News

The three-day Labor Day weekend often means relaxing and spending time with people you may not often…

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Comprehensive MRI-based Study Reveals Brain Changes Linked to Friedreich’s Ataxia – Friedreich’s Ataxia News

A comprehensive evaluation of the brain with magnetic resonance imaging (MRI)-based methods and clinical features of Friedreich’s…

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Seasons of Life with Friedreich’s Ataxia – Friedreich’s Ataxia News

Since my 2013 Friedreich’s ataxia diagnosis, the condition has consumed a part of every day. I was…

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‘Members are doing it for themselves’ in new Ataxia charity after controversial closure – Independent.ie

The man behind a new charity after the closure of controversial Ataxia Ireland has slammed “career CEOs”…

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The Emotional Workout of Physical Therapy – Friedreich’s Ataxia News

In Friedreich’s ataxia (FA) care, we don’t really have treatment options. There are clinical trials taking place…

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Tips for Traveling with Friedreich’s Ataxia – Friedreich’s Ataxia News

When you plan a destination or a weekend getaway, it is wise to make travel and transportation…

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I’m Still Pedaling to Keep My Oath – Friedreich’s Ataxia News

I gritted my teeth. The August sun in south Louisiana pounded unrelentingly onto my head. Drops of…

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Electrical Stimulation Helps Ataxia Symptoms – MedPage Today

Direct current electrical stimulation to the brain and spinal cord appeared effective in treating symptoms of neurodegenerative…

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An Introduction to a ‘Practical Guide to Life with FA’ – Friedreich’s Ataxia News

My name is Christina Logan, and doctors diagnosed me with the rare neuromuscular disorder Friedreich’s ataxia at…

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Hitchin theatre to host star-studded UK premiere of film The Ataxian – The Comet

The UK premiere of The Ataxian, about a long-distance cyclist with Friedreich’s ataxia, is to be held…

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The Day I Began Tracking My ‘Little Victories’ – Friedreich’s Ataxia News

In an instant, my plans and dreams vanished; I was left wandering through life with no set…

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Aussie plant scientists’ discovery points to treatments for major genetic disorder – Xinhua

Australian plant scientists on Friday said they have discovered a new molecular mechanism in genes, a…

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A place at The Open for young golfer who overcame cerebral palsy – The Telegraph

hen Ash Turner developed a rare form of cerebral palsy after a freak childhood accident his parents…

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Britain’s strongest disabled man shares his 17-year battle with ‘invisible disease’ Ataxia – SWNS Stories

These pictures show Britain’s strongest disabled man – who holds the record for lifting stones heavier than…

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Friedreich’s Ataxia Patients Have Altered Connectivity Between Brain Regions, Study Shows – Friedreich’s Ataxia News

People with Friedreich’s ataxia (FA) have alterations in the connectivity of different brain regions, which most likely…

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It’s OK to Be Honest About Your Emotions – Friedreich’s Ataxia News

Last month was Mental Health Awareness Month, so I thought this might be a good time to…

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Cancer Treatment May Be Able to Prevent Heart Problems in Friedreich’s Ataxia, Study Suggests – Friedreich’s Ataxia News

A therapy already approved to treat cancer could potentially be used to prevent heart abnormalities in Friedreich’s…

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For Father’s Day, this Indianapolis dad just wants a cure for his daughter – Indianapolis Star

Virgil Harris would do anything for his daughter, his baby. Doesn’t matter that she’s not a baby…

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Friedreich Ataxia Drug Market Insights June 2018 covering Market Share, Market Concentration Rate, Mergers and Acquisition, Expansion, Gross Margin, Leading Players, Raw materials, Substitutes threat and Innovation – satPRnews

A new report titled Global Friedreich Ataxia Drug Market Professional Survey Report 2018 has been added to…

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In FA Case Study, Baclofen Administered in Spinal Canal Resolved Severe Muscle Spasms – Friedreich’s Ataxia News

Painful muscle spasms in a patient with Friedreich’s ataxia (FA) were managed by administering baclofen in the…

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Gene Therapy Fully Reverses Friedreich’s Ataxia Changes in Mouse Model, Study Shows – Friedreich’s Ataxia News

A gene therapy approach to deliver frataxin, the protein that’s deficient in Friedreich’s ataxia (FA) patients, was…

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Endoplasmic Reticulum Stress Could Be Treatment Target for Friedreich’s Ataxia, Study Suggests – Friedreich’s Ataxia News

Endoplasmic reticulum stress due to loss of frataxin protein plays a major role in the development of…

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Ataxia charity to close after ‘losing trust’ – Independent.ie

Charity Ataxia Ireland is set to be closed with its functions transferred to another body. The board of…

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Why Glenn McCrory is setting out on a new challenge in memory of someone truly special – Chronicle Live

Tyneside boxing champ Glenn McCrory is ready to scale new heights – in memory of his tragic…

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Could stem cell therapy be an effective treatment for Friedreich’s ataxia? – University of Bristol

Researchers at the University of Bristol are looking for people with an inherited neurological condition called Friedreich’s…

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Fight or Flight in FA Patients – Friedreich’s Ataxia News

Almost everyone can point to moments in their lives dictated by the choice: fight or flight. By…

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Investigational Friedreich’s Ataxia Therapy RT001 Found to Be Safe, Well-Tolerated in Early Trial – Friedreich’s Ataxia News

Results from a Phase 1/2 clinical study support the safety and tolerability of RT001, an investigational therapy…

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Mobility Devices Linked to Worse Quality of Life in Pediatric FA Patients, Study Suggests – Friedreich’s Ataxia News

Researchers found that the use of mobility devices is associated with a poorer quality of life in…

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Man from Weston-super-Mare to host variety show fundraiser for ataxia after watching niece battle the degenerative disease – Somerset Live

A man from Weston-super-Mare is hosting a variety show fundraiser at the Grand Pier in May to…

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Please Don’t Refer to My Caregivers As ‘Slaves’ – Friedreich’s Ataxia News

When I was a little girl, I used to have this recurring fantasy every so often in…

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Study Describes Pitfalls of FA Genetic Tests, Possible Need for More Analysis – Friedreich’s Ataxia News

Researchers report that genetic tests for Friedreich’s ataxia (FA) are complex and may require additional screening in…

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DNA Repair Protein Could Be Key to Understanding FA Progression, Study Suggests – Friedreich’s Ataxia News

Using human cells, researchers have found that targeting the MLH3 protein involved in DNA repair can reduce…

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Targeting DNA Repair Protein Could Treat Friedreich’s Ataxia – Rare Disease Report

Could targeting a protein involved in DNA repair reduce the cause of Friedreich’s ataxia? Data from a…

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Your Diagnosis, Your Choice – Friedreich’s Ataxia News

Friedreich’s ataxia is physically challenging, but the mental aspect is often extremely debilitating as well. People are…

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What rideATAXIA Means to Me – Friedreich’s Ataxia News

Friedreich’s ataxia (FA) is a big, overwhelming disease. And with it being so rare, it can feel…

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Voluntary Euthanasia Is a Complex Topic – Friedreich’s Ataxia News

I’m going out on a limb here to talk about one of those controversial issues that tend…

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Bone Marrow Transplants Promote Nerve Cell Repair in Mice with Friedreich’s Ataxia, Study Shows – Friedreich’s Ataxia News

Bone marrow transplants led to nerve cell restoration in a mouse model of Friedreich’s ataxia (FA), a…

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Research reveals a mechanism that drives ataxia type 1 – EurekAlert

When the protein ATAXIN1 accumulates in neurons it causes a neurodegenerative condition called spinocerebellar ataxia type 1…

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Statins Could Help Reduce Friedreich’s Ataxia Patients’ Risk of Heart Disease, Study Suggests – Friedreich’s Ataxia News

Statins, a cholesterol-lowering medication, can increase the amount of a good cholesterol component that is found in…

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Schoolgirl’s life transformed after taking ‘medicinal cannabis oil’ in tea – Scottish Daily Record

The life of a Hamilton schoolgirl has been transformed since she started taking ‘medicinal cannabis oil’ in…

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Why the Movie ‘The Ataxian’ Is So Important to the FA Community – Friedreich’s Ataxia News

On February 26, 2018, the movie The Ataxian was finally released to the public. If you’re not…

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Statins Could Provide Cardiovascular Relief For Friedrich’s Ataxia Patients – ReliaWire

Friedrich’s ataxia (FRDA) is a recessive hereditary ataxia, caused by a specific genetic mutation that alters frataxin…

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Barry mum and walking team raise thousands of pounds for Ataxia UK – Barry and District News

A BARRY mum whose cousin suffers from a rare neurological condition has, with a team of 29…

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Breaking Down Barriers in Care Settings – Friedreich’s Ataxia News

Why is it so hard for some people to recognize that people with a disability are human…

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‘He seized every moment’… Dundee mum’s touching tribute to disabled son Stewart, 33 – Evening Telegraph

The mother of a disabled man who died suddenly said her son achieved more in his 33…

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Friedreich’s Ataxia Patient Spotlight: John Cernosek – Friedreich’s Ataxia News

Meet John Cernosek from Maryland! John lives in Silver Spring with his beautiful girlfriend, who also happens…

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Friedreich’s Ataxia and Marriage: Dealing with the Diagnosis – Friedreich’s Ataxia News

When I met my husband Kyle in high school at the age of 16, everything was perfect….

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Uric Acid Levels May Be Biomarker for Friedreich’s Ataxia, Study Suggests – Friedreich’s Ataxia News

Serum uric acid (UA) levels are increased in Friedreich’s ataxia patients and may be a disease biomarker…

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Friedreich’s Ataxia Patient Spotlight: Laura Wright – Friedreich’s Ataxia News

The Friedreich’s Ataxia Patient Spotlight is another method of raising awareness for Friedreich’s Ataxia. With an understanding…

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Why a Cure Isn’t Everything to Me Anymore – Friedreich’s Ataxia News

When I was younger, I just wanted to be healthy and able-bodied. When I went to sleep, I…

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Pregnancy and Friedreich’s Ataxia – Friedreich’s Ataxia News

When diagnosed with Friedreich’s ataxia (FA) at the age of 25, I was devastated. I thought I…

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How to Find Your Coping Mechanisms – Friedreich’s Ataxia News

Let’s just put it all out on the table: depression and anxiety come with having Friedreich’s Ataxia. The…

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No One Knows Your Body Better than You Do – Friedreich’s Ataxia News

Growing up with a rare condition, I always relied on doctors and specialists to know how best…

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FARA/UCLA Holding Friedreich’s Ataxia Patient Symposium in February – Friedreich’s Ataxia News

The Friedreich’s Ataxia Research Alliance (FARA) and the University of California Los Angeles (UCLA) have joined forces…

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Protein YAP in Early Life Influences Adult Spinocerebellar Ataxia Pathology – Tokyo Medical and Dental University

Study led by Tokyo Medical and Dental University (TMDU) identifies crucial protein that rescues progression of adult…

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An Introduction to My Darling Disability – Friedreich’s Ataxia News

My name is Kendall and I was diagnosed with Friedreich’s ataxia (FA) at the age of 25. I…

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Accessibility for Wheelchair Users – Friedreich’s Ataxia News

Last year, my eyes were opened to high-needs disabilities when I moved out of my home and…

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Learn More About the MOXIe Clinical Study for Friedreich’s Ataxia – Friedreich’s Ataxia News

Later this month, Jennifer Farmer, Executive Director of FARA and Dr. Keith Ward, CDO of Reata Pharmaceuticals,…

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Hypertension Therapy Shows Potential To Reverse Friedreich’s Ataxia Symptoms In Mouse Study – Friedreich’s Ataxia News

Researchers found a 50-year-old hypertension therapy can enhance the amount of frataxin protein in cells from patients…

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Laughing in the Face of Adversity – Friedreich’s Ataxia News

For those of us with FA or any other disability, overcoming adversity is part of our daily…

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Before the #CureFA Mission – Friedreich’s Ataxia News

Happy New Year to all of you! I hope 2018 has been treating you well so far…

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Emotion Perception Seen to Be Impaired in Friedreich’s Ataxia Patients, Study Finds – Friedreich’s Ataxia News

Patients with Friedreich’s ataxia have impaired emotion recognition that may be secondary to neuropsychological impairment, according to…

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Symptoms of FA Largely Reversed in New Mouse Model, Study Shows – Friedreich’s Ataxia News

UCLA scientists have found that many early symptoms of Friedreich’s ataxia (FA) can be reversed, according to research they conducted in a new…

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The Intertwining of Education and Disability – Friedreich’s Ataxia News

I was diagnosed with Friedreich’s ataxia (FA) as an 11-year-old. When I was about 15 or 16, the reality of my diagnosis hit…

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Early Loss of Cerebellar Mitochondria May Drive Disease in FA, Mouse Study Suggests – Friedreich’s Ataxia News

The production and function of mitochondria — cellular power plants that convert nutrients to energy — is impaired in the cerebellum of the…

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Research Highlight: Switching off Friedreich’s Ataxia – Technology Networks

Friedreich’s ataxia is an inherited disease that causes damage to the nervous system and a loss of coordination that typically progresses to muscle…

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Setting New Year’s Goals When You Have Friedreich’s Ataxia – Friedreich’s Ataxia News

January is the perfect time for new goals, new hobbies and a fresh start. The whole “new year, new me” phenomenon is in full…

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Study reveals reversibility of Friedreich’s ataxia in mice – UCLA Newsroom

Friedreich’s ataxia is an inherited disease that causes damage to the nervous system and a loss of coordination that typically progresses to muscle…

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Friedreich’s Ataxia News: A Look Back at 2017 – Friedreich’s Ataxia News

With the holiday season in full swing, it’s the perfect opportunity to take a look back at 2017. It’s been a year full of…

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How to Handle the Holidays When You Have Friedreich’s Ataxia – Friedreich’s Ataxia News

It’s that time of year again. It’s time to gather with your friends and family for the holidays and wait for the flow of…

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New Compound May Have Therapeutic Benefits for FA, Other Neurodegenerative Diseases – Friedreich’s Ataxia News

Researchers have identified a new compound, CT51, that can potentially protect neurons from damage in severe neurodegenerative diseases, such as Friedreich’s ataxia. It…

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UCLA researchers reveal reversibility of Friedreich’s ataxia in mouse models – News-Medical.net

In children and adults with Friedreich’s ataxia, an inherited disease that causes damage to the nervous system, a loss of coordination typically progresses…

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Why Patience Is So Important When You Have FA – Friedreich’s Ataxia News

Friedreich’s ataxia has numerous levels of frustration that can sometimes be maddening. The fact you have to depend on someone else to live your…

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More Powerful DNA Mapping Could Help Scientists Better Understand Friedreich’s Ataxia – Friedreich’s Ataxia News

Researchers at Tufts University have developed a new, more powerful method of analyzing DNA sequencing to better identify and understand complex genomic rearrangements…

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Global Treatment for Syndromes of Progressive Ataxia and Weakness Disorders Market Report 2016 – 2024 : by product, application, by geography and company profile – WirePRNews

Global Treatment for Syndromes of Progressive Ataxia & Weakness Disorders Ataxia refers to a disorder caused by the lack of coordination of muscle movements…

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Low Levels of Nrf2 Protein Play Role in Friedreich’s Ataxia Heart Damage, Study Finds – Friedreich’s Ataxia News

Lack of frataxin protein in the heart muscles of mice with Friedreich’s ataxia leads to low levels of another protein that protects against…

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Lab-Grown Sensory Neurons May Be Used to Study Friedreich’s Ataxia, Researchers Say – Friedreich’s Ataxia News

Sensory neurons derived from patients with Friedreich’s ataxia may be a valuable model for studying disease processes and test new treatments, researchers from…

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Activating Nrf2 Protein Might Prevent Nerve Cell Degeneration in Friedreich’s Ataxia, Study Finds – Friedreich’s Ataxia News

Activating a protein known as Nrf2 might prevent the nerve cell disintegration that is a hallmark of Friedreich’s ataxia, a study indicates. The research,…

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Friedreich’s Ataxia sufferer Hayden Lynex rowing for great cause – New Zealand Herald

Living with a disability that forces him to walk with a stick has not deterred Hayden Lynex from taking on the most physical…

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Biomarin Advances Compound for Human Friedreich’s Ataxia Trials – Friedreich’s Ataxia News

Biomarin has selected a potential therapy candidate to test in human clinical trials in Friedreich’s ataxia. The compound, BMN 290, turns the frataxin…

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Early intervention may hold key to treatment of Friedreich’s ataxia – Science Daily

New research published today in Disease Models & Mechanisms indicates that early intervention should be a key target in the development of new…

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Why It’s Important to Have Friends or Acquaintances With FA – Friedreich’s Ataxia News

No matter the circumstance, it makes sense to maintain relationships with those who are in the same, or in a similar, situation as…

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Engineered Frataxin Protein Improves Lifespan of Mice with Friedreich’s Ataxia, Study Shows – Friedreich’s Ataxia News

A manmade version of the frataxin protein that’s missing in Friedreich’s ataxia increased frataxin levels in the muscles of mice with the disease,…

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Yate man loses his locks in aid of Ataxia UK – Gazette Series

A YATE man is feeling the cold this week, after shaving his head for charity. Sam Merchant decided to go bald to raise cash…

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Gillingham woman ‘housebound’ after disability funding cut – BBC News

A woman said she is housebound after funding was cut for a specially-adapted mobility car she relied on to get to work. Deborah Brown…

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#IARC 2017 – Kyle Byrant Interview and ‘Where We Fit in Puzzle of Curing’ – Friedreich’s Ataxia News

Some 10 years ago, Kyle Bryant and his parents, Mike and Diana, were casting about for a way to make a difference in…

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Ayr man who planned to walk across Europe raising Ataxia awareness gets set for final journey after fatal French fall – Scottish Daily Record

He’s strode across Europe raising money and awareness for a rare disease that struck him down in his prime. But Ayr’s own Kilted Walker,…

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#IARC2017 – Natural History of FA May Help Tailor More Effective Clinical Trials, EFACTS Suggests – Friedreich’s Ataxia News

The European Friedreich Ataxia Consortium for Translational Studies (EFACTS) group suggested specific outcome measures it found to be best suited to clinical trials…

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Call It FA-tigue – Friedreich’s Ataxia News

It’s not something a Red Bull or cup of coffee can fix. Pre-workout only goes so far. No matter what I do, it’s…

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#IARC2017 – At-home Speech Rehab Program Seen to Significantly Help Ataxia Patients – Friedreich’s Ataxia News

Ataxia patients who took part in a new, at-home program for speech impairment showed significant improvements in their ability both to speak more…

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New Study Shows Bowel and Sexual Dysfunction in Friedrich’s Ataxia – Rare Disease Report

Data from a study published in the Orphanet Journal of Rare Diseases concludes that a high percentage of Friedrich’s Ataxia (FA) patients have…

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Charity chief executive to challenge regulator’s findings on payments of €84,000 – The Irish Times

The chief executive of Ataxia Ireland has rejected key findings of a Charities Regulator report and is to seek a judicial review. Barbara Flynn…

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A Look at Life With Friedreich’s Ataxia – Friedreich’s Ataxia News

It’s hard for most people to understand what daily life is like for someone with Friedreich’s ataxia. Thankfully,…

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Explaining Friedreich’s Ataxia – Friedreich’s Ataxia News

Friedreich’s ataxia (FA) is a genetic and progressive neuromuscular disease that attacks the body’s nerves and muscles. Usually occurring in childhood, symptoms of…

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Even in a Maddening Answer, a Sense of Relief – Friedreich’s Ataxia News

“Why can’t you help bring in the groceries?” “Are you that lazy?” “Are you that drunk, already?” “Why are you so tired all…

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Friedreich’s Ataxia Patients’ Meeting with FDA Captures Their Reality, Fears and Hopes – Friedreich’s Ataxia News

Missing 184 class periods in a year due to fatigue. Having someone tell the school principal you’re drunk because of your walking problems….

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Irish charity accused of financial irregularities delivers ‘action plan’ to Regulator – Independent.ie

A charity accused of wrongly paying over €84,000 to two former trustees has delivered an action plan to the Charities Regulator. Ataxia Ireland asked…

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Studies of Friedreich’s Ataxia Brain Changes Need to Gain Scale, Review Argues – Friedreich’s Ataxia News

Research into how abnormalities in the large area of the brain are part of Friedreich’s Ataxia disease processes will advance understanding and improve…

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9 Things to Know About the Inheritance of Friedreich’s Ataxia – Friedreich’s Ataxia News

Friedreich’s ataxia is an inherited disease that affects movement and coordination. It’s a progressive disease with symptoms including loss of strength, weakened muscles,…

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Thomas Swales was diagnosed with Friedreich’s Ataxia when he was aged 15 – Daily Mail

A ‘unique’ teenager took his own life after contracting a rare incurable illness that he feared he would be wheelchair-bound for life, an…

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10 Useful Things to Know If You’re Attending #IARC2017 – Friedreich’s Ataxia News

Held in the city center of Pisa in the Tuscany area of Italy, conference visitors will also be able to see some of…

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7 Stress-Busting Tips for Parents of Children With Friedreich’s Ataxia – Friedreich’s Ataxia News

Caring for a child with a chronic illness such as Friedreich’s ataxia can be very stressful and can take its toll emotionally. The…

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Teenager, 19, killed himself after fearing he would end up in a wheelchair after rare incurable illness attacked his nervous system – The Sun

A TRAGIC teenager killed himself after fearing the incurable illness attacking his nervous system would leave him wheelchair-bound. Thomas Swales, 19, had begun to…

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The Medical Management of Friedreich’s Ataxia – Friedreich’s Ataxia News

While there is no cure for Friedreich’s ataxia, there are treatments that can help patients manage symptoms and improve their quality of life….

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Study Links Diabetes in Friedreich’s Ataxia to More Severe Disease and Disability – Friedreich’s Ataxia News

Researchers at the Children’s Hospital of Philadelphia (CHOP) have linked the presence of diabetes in Friedreich’s ataxia (FA) patients to more severe symptoms…

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Chondrial’s CTI-1601, a Potential Therapy for FA, Granted Orphan Drug Status by FDA – Friedreich’s Ataxia News

“We are very pleased to receive orphan drug designation for CTI-1601. Our team is working to complete all Investigational New Drug (IND) enabling…

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Friedreich’s Ataxia and Cardiomyopathy – Friedreich’s Ataxia News

Friedreich’s ataxia is caused by a deficiency of the frataxin protein. This can result in a condition called cardiac neuropathy. It involves damage…

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5 Types of Treatment for Friedreich’s Ataxia – Friedreich’s Ataxia News

Friedreich’s ataxia (FA) is a genetic neuromuscular disease that can lead to motor control issues and often leads to the inability to walk,…

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Dysarthria in Friedreich’s Ataxia – Friedreich’s Ataxia News

Dysarthria is a collective name that refers to a group of movement disorders that affect the muscular control of speech, resulting in altered…

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5 Things to Know About an Ataxia Diagnosis – Friedreich’s Ataxia News

If you or a loved one have been diagnosed with ataxia, it’s normal to feel overwhelmed and concerned about what the future has…

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Ronde Barber and Kyle Bryant Talk About Friedreich’s Ataxia – Friedreich’s Ataxia News

In this video, Tampa Bay Buccaneers’ football player Ronde Barber talks about his involvement with the non-profit organization,…

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5 Major Symptoms of Friedreich’s Ataxia – Friedreich’s Ataxia News

Friedreich’s ataxia (FA) is a rare genetic disorder where the body produces antibodies that limit the production of frataxin, a protein vital for…

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Explaining Friedreich’s Ataxia – Friedreich’s Ataxia News

Friedreich’s Ataxia (FA) is a genetic and progressive neuromuscular disease that attacks the body’s nerves and muscles. Usually occurring in childhood, symptoms of…

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Frederichs Ataxia, Michelle Beggan: The F word and me – The Impartial Reporter

E is for… So it’s a lovely ‘summery’ hello from me this month folks! I can’t believe that summer time is upon us already…

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Footballers from NCFootball, Barnet, fundraise to send man with Ataxia, a rare genetic condition, on dream trip to watch Lionel Me – Times Series

Footballers and fans are fundraising to send a man with a rare condition to Barcelona to make his dreams come true. Terry Foskett, manager…

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Researchers Create ‘Heart Cells in a Dish’ to Study FA Heart Disease – Friedreich’s Ataxia News

Australian researchers have successfully turned stem cells from Friedreich’s ataxia (FA) patients into heart cells to study molecular anomalies that may contribute to…

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Multiple Sclerosis Treatment Holds Promise for Friedreich’s Ataxia Patients, Studies Show – Friedreich’s Ataxia News

Friedreich’s ataxia (FRDA) patients have less mitochondria than other people because of the mutation in the frataxin (FXN) gene that is associated with…

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Dudley Ataxia group’s summer fair to raise funds and awareness for the neurological disorder – Stourbridge News

SUFFERERS of neurological disorder Ataxia are set to get some extra support as Dudley fundraisers host a summer fair next weekend. The Dudley Ataxia…

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Brain May Alter Cerebral Functions to Compensate for Motor Deficits in Friedreich’s Ataxia – Friedreich’s Ataxia News

Researchers detected alterations in cerebral brain functions of patients with Friedreich’s ataxia and believe they may mitigate the impact of motor impairments of…

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Is Reata’s Friedreich’s Ataxia Study a Failure? – Rare Disease Report

Data from a Phase 2 Friedreich’s ataxia (FA) study by Reata Pharmaceuticals is making its rounds on social media today. The data, according…

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Re-purposing MS Drug to Treat Friederich’s Ataxia – Technology Networks

Two new studies of progressive, neurodegenerative diseases linked to defects in cells’ mitochondria offer hope for developing a new biomarker for research and…

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Part One of Friedreich’s Ataxia MOXIe Trial Shows Promising Results – Friedreich’s Ataxia News

Omaveloxolone, a drug developed by Reata Pharmaceuticals, may slow disease progression and promote the recovery of lost neurological function…

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Brain Structure Abnormalities in Late-onset Friedreich’s Ataxia Not Linked to Disease Features – Friedreich’s Ataxia News

People with late-onset Friedreich’s ataxia have similar, but not identical, abnormalities of brain structures as those who become ill at an earlier age,…

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Pfizer Seeks Patent Covering a Friedreich’s Ataxia Therapy That Resverlogix Has Already Developed – Friedreich’s Ataxia News

Pfizer is seeking a European patent on a family of compounds that can treat Friedreich’s ataxia by increasing levels of the…

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Ataxia-cause Patterns Emerge in Study but Researchers Unable to Establish Any in a Third of Cases – Friedreich’s Ataxia News

A group of brain diseases known as sporadic late-onset acute cerebellar ataxias have been attributed to lots of causes, so an American research…

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Stem Cell-secreted Molecules Restore Function to Human Friedreich’s Ataxia Cells – Friedreich’s Ataxia News

Molecules released by certain stem cells may promote an increase of frataxin protein and rescue cellular function, researchers have shown in a cell…

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Friedreich’s Ataxia Research Alliance Opens Research Grant Awards – Friedreich’s Ataxia News

Researchers working in Friedreich’s ataxia may submit their project proposals for funding by two grants awarded by the Friedreich’s Ataxia Research…

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Friedreich’s Ataxia Patient Loving the Outdoors Again, Thanks to All-Terrain Wheelchair – Rare Disease Report

Dillon Lynn of Pinetop, NC spent most of his youth being outdoors until a rare neuromuscular condition made outdoor adventures impossible. That is, until…

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Iron Metabolism Plays No Role in Development of Friedreich’s Ataxia, Study Suggests – Friedreich’s Ataxia News

Low levels of frataxin protein, the hallmark of Friedreich’s ataxia, do not seem to impact the function of red blood cells, particularly the…

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Gait Speed May Improve Detection of Short-term Disease Progression in Friedreich’s Ataxia – Friedreich’s Ataxia News

Gait speed might be used as an objective measure to assess disease progression in adults with Friedreich’s ataxia who are still able to…

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Discovery Could Address Reduced Protein Expression Associated with Friedreich’s Ataxia – Friedreich’s Ataxia News

Friedreich’s ataxia (FRDA) stems from abnormal DNA code expansions in the Frataxin (FXN) gene that collectively reduce the expression of the FXN protein. A…

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Turkish Scientists Find Signs of FA and SCA in Patients Diagnosed with Hereditary Cerebellar Ataxia – Friedreich’s Ataxia News

A Turkish study has classified the genetic and observable characteristics of Friedreich’s ataxia (FA) and spinocerebellar ataxia (SCA) in patients diagnosed with hereditary…

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Identifying Ataxia Cause is Challenging, But Crucial Task, Study Finds – Friedreich’s Ataxia News

Identifying the underlying cause, and setting a diagnosis of ataxia is crucial, since therapies are available for some cases of immune-mediated or genetically…

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Ataxia: The Life-changing Illness You’ve Probably Never Heard Of – Huffington Post UK

September 25, is International Ataxia Awareness Day. Chances are you won’t have heard of ataxia as an illness in its own right, but…

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Study May Explain Why Only Certain Cells Die in Friedreich’s Ataxia – Friedreich’s Ataxia News

The selective degeneration of certain neurons in patients with Friedreich’s ataxia may be explained by the effect that the lack of frataxin has…

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Case Report of Young Sisters Indicates FA Symptoms Vary Widely – Friedreich’s Ataxia News

A case report suggests that Friedreich’s ataxia can manifest as abnormal voluntary eye movements, rather than the typical loss of gait and limb…

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Inflammatory Bowel Disease, Growth Hormone Deficiency More Likely in Patients With FA, Study Shows – Friedreich’s Ataxia News

Patients with Friedreich ataxia (FA) are more likely to develop inflammatory bowel disease and growth hormone deficiency than those without FA, concludes a…

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Lancet Article Questions Value of Natural History Studies in Friedreich’s Ataxia – Friedreich’s Ataxia News

An article in the medical journal The Lancet Neurology questions the usefulness of natural history studies in designing better clinical trials…

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Preventing Frataxin Degradation May Be Strategy to Manage Friedreich’s Ataxia – Friedreich’s Ataxia News

Researchers may have found a new therapeutic target for the management of Friedreich’s ataxia. A study, “E3 Ligase RNF126 Directly Ubiquitinates Frataxin,…

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Liver Growth Factor Partially Restores Motor Coordination in Friedreich’s Ataxia Mice – Friedreich’s Ataxia News

Liver growth factor (LGF) increased the frataxin protein and reduced oxidative stress when administered to mice with Friedreich’s ataxia (FA). This approach leads…

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‘When I went out after the Junior Cert results a bouncer thought I was drunk’ – Living with Friedreich’s Ataxia – Irish Independent

Emily Felix, from Kilkenny who is living with a rare condition known…

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Late-Onset Friedreich’s Ataxia May Be Confused with Another Genetic Disorder, Case Study Finds – Friedreich’s Ataxia News

Symptoms of late-onset Friedreich’s ataxia may be confused with those of another genetic disorder, Charcot–Marie–Tooth (CMT) disease, according to a case study. Researchers called…

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Long-term Diseases Like Friedreich’s Ataxia Are Costly to Treat, But More Costly to Not – Friedreich’s Ataxia News

Although a rare disease, FA is the most frequent of all inherited ataxias, which affect muscle control. FA, which results from mutations in…

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UT Southwestern scientists find potential treatment for Friedreich’s … – EurekAlert (press release)

Researchers at UT Southwestern Medical Center have identified synthetic RNA and DNA that reverses the protein deficiency causing Friedreich’s ataxia, …

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As Potential Therapy for Friedreich’s Ataxia, Researchers Study RNA Transcript Therapy to Deliver Frataxin mRNA – Friedreich’s Ataxia News

Friedreich’s ataxia is an autosomal recessive inherited disease that causes progressive damage to the nervous system. Although it is primarily a neurodegenerative disease…

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Friedreich’s Ataxia Clinical Study of Oral Drug, RT001, Enrolling … – Friedreich’s Ataxia News

Here, Retrotope announces start of patient enrollment for a high-dose cohort of RT001, a potential Friedreich’s ataxia treatment, now in a Phase 1-2…

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UT Southwestern Scientists Reverse Protein Deficiency in Friedreich’s Ataxia with Use of Synthetic RNA and DNA – BioNews Texas

FA results from modifications to certain DNA sequences that inhibit cells from producing enough frataxin. The lack of this needed protein can lead…

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DHA & The Boom Room Present: Ataxia – Deep House Amsterdam (press release) (blog)

Alongside their activities in the studio, Ataxia perform at some of North America’s best clubs, such as Standard Rooftop in Downtown LA, Audio…

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Orphan Drug Status Granted to BHV-0223 for Spinocerebellar Ataxia – Monthly Prescribing Reference (registration)

Portage Biotech and Biohaven Pharmaceutical announced that the Food and Drug Administration (FDA) has granted Orphan Drug designation to BHV-0223 for the treatment…

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US FDA grants orphan drug designation to BHV-0223 for spinocerebellar ataxia treatment – pharmabiz.com

Ataxia is a complaint of loss of control of voluntary body movements and can involve unsteady gait, speech difficulties, and clumsiness, potentially progressing…

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Portage’s Biohaven orphan drug designation request granted for the treatment of spinocerebellar ataxia – PR Newswire (press release)

Vlad Coric, M.D., CEO of Biohaven, added, “Receiving the orphan drug designation request for spinocerebellar ataxia supports our global development strategy and goal…

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Promising Friedreich’s Ataxia Therapy Seen in Synthetic RNA and DNA Agents Used by UT Researchers – Friedreich’s Ataxia News

University of Texas (UT) Southwestern Medical Center researchers have identified RNA and DNA synthetic agents that increase frataxin levels and alleviate Friedreich’s ataxia…

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UT Southwestern scientists find potential treatment for Friedreich’s ataxia UT Southwestern Medical Center – EurekAlert (press release)

16, 2016 – Researchers at UT Southwestern Medical Center have identified synthetic RNA and DNA that reverses the protein deficiency causing Friedreich’s ataxia,…

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Retrotope Advances RT001 in Clinical Trials to Treat Friedreich’s ataxia – Marketwired (press release)

LOS ALTOS, CA–(Marketwired – Feb 22, 2016) – Retrotope, a privately held clinical stage pharmaceutical company, today announced the successful completion of the…

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Friedreich Ataxia – Pipeline Review, H2 2015 – Medgadget.com (blog)

This report provides comprehensive information on the therapeutic development for Friedreich Ataxia, complete with comparative analysis at various stages, therapeutics assessment by drug…

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Agilis Biotherapeutics and Waisman Biomanufacturing Enter Into Exclusive Manufacturing Agreement for Friedreich’s … – Business Wire (press release)

It is the most common inherited ataxia, with 1 in every 100 people being carriers of a mutated FXN gene. FA typically arises…

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Synthetic RNA and DNA could reverse protein deficiency that causes Friedreich’s ataxia – News-Medical.net

Researchers at UT Southwestern Medical Center have identified synthetic RNA and DNA that reverses the protein deficiency causing Friedreich’s ataxia, a neurological disease…

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Ride Ataxia’s Kyle Bryant to Be Keynote Speaker at Exposition – Friedreich’s Ataxia News

The Illinois Biotechnology Industry Organization (iBIO) recently announced that Kyle Bryant, founder and director of Ride Ataxia, Friedreich’s Ataxia Research Alliance, will be…

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In Friedreich’s Ataxia, Neurotrophins Hold Therapeutic Potential to Prevent, Treat Neurodegeneration – Friedreich’s Ataxia News

Researchers have demonstrated in the lab (in vitro) and in living subjects (in vivo), that gene transfer of brain-derived neurotrophic factor (BDNF) protected…

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Friedreich’s Ataxia Drug Developer RaNA Therapeutics to Present Data at Conference – Friedreich’s Ataxia News

RaNA Therapeutics, a Cambridge, Massachusetts-based biotech company that develops next-generation RNA-targeted medicines and which currently has a lead program in Friedreich’s Ataxia, announced…

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Friedreich Ataxia Pipeline Review, Market Share, Stragegy, Size and Forecast 2016 – 2020 – Medgadget.com (blog)

MRS383 “Friedreich Ataxia Global 2015 Clinical Trials Review, H2” provides an detailed overview of Friedreich Ataxia scenario. Report includes top line data relating…

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Spinocerebellar ataxia type 21 exists in the Chinese Han population – Nature.com

Recently, mutations in transmembrane protein 240 (TMEM240) were identified as the cause of spinocerebellar ataxia type 21 (SCA21) in several French families. Clinically,…

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Promising Friedrich’s Ataxia Drug Candidate Gains Support of NIH Scientists – Friedreich’s Ataxia News

Chondrial Therapeutics recently announced that further development of its lead drug candidate for the treatment of Friedreich’s ataxia, TAT-Frataxin (TAT-FXN), will be aided…

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Ely police officers to take on Three Peaks Challenge in aid of Ataxia UK – Ely News

All funds they raise will go towards the charity, Ataxia UK. Mark said: “We are all really excited about doing the challenge as…

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Friedreich Ataxia and Nephrotic Syndrome Case Studies Show Steroid Treatment Promising – Friedreich’s Ataxia News

FRDA is a genetic, progressive, neurodegenerative disorder that causes damage to the nervous system and leads to impaired muscle coordination (ataxia). The disease,…

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Avalanche to Expand Gene Therapy Holdings by Acquiring Annapurna – Friedreich’s Ataxia News

Avalanche Biotechnologies, based in Menlo Park, California, is a gene therapy company focused on the treatment of chronic or debilitating diseases, including Friedreich’s…

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Potential Friedreich’s Ataxia Therapy Advances with FARA’s Support – Friedreich’s Ataxia News

CAT-4001 is being developed by Catabasis as a potential treatment for neurodegenerative diseases, such as FA and amyotrophic lateral sclerosis (ALS). CAT-4001 is…

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Meet the Man Who Is Fighting for Survival with a Smile. His Spirit Is Infectious. – The Better India (blog)

The Better India (blog) Meet Vilas Shinde – a man whose indomitable spirit is taking Ataxia, a debilitating condition, by its horns. This is…

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