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ATAXIA IN THE NEWS
Elbert County News’I felt like I could do anything’ Parker man reaches new heights with adaptive climbing wall
Reata PharmaceuticalsFDA Confirms That Use of mFARS as Primary Endpoint in Part 2 of the MOXIe Trial Can Support Approval of Omaveloxolone in Friedreich’s Ataxia
Business InsiderBiohaven Completes Randomization In Phase 2/3 Trial In Spinocerebellar Ataxia: Expected Topline Data Advanced To Fourth Quarter Of 2017
CisionChondrial Announces FDA Orphan Drug Designation for CTI-1601, a Novel Investigational Technology for the Treatment of Friedreich’s Ataxia
MIT Technology ReviewGene Editing Study in Human Embryos Points toward Clinical Trials
Mi2nNeurological Issue Doesn’t Stop The Music For Ian C. Bouras
Woodburn IndependentWoodburn man with rare neurological disorder raising money for cure
FOX 8 — ClevelandStudents with special needs shine during horse show
Hank Stolz Show – Charter 3 TVJohn & Dana Mauro, Laura Kurdziel, Assistant Professor at Merrimack College, and Massachusetts State Senator Michael Moore talk about the 10 year anniversary of the Walk & Roll for Ataxia
Bridgewater Wicked LocalDespite obstacles, Bridgewater woman conquers Spartan race
StreetInsider.com Reata Pharma (RETA) Receives Orphan Drug Designation for Omaveloxolone for Treatment of Friedreich’s Ataxia Science Translational MedicineThinking About Genetics and Disease
WPTV Channel 5Living with ataxia
YakTriNewsCBC wheelchair-bound graduate to walk across stage with help of Pasco Police officers
The Davis EnterpriseFriedreich’s ataxia events highlight challenges, research breakthroughs
NasdaqFour National Organizations, Hundreds of Families Impacted, Join Together to Speak with FDA about Drug Development in Friedreich’s Ataxia
NasdaqReata Pharmaceuticals, Inc. Announces Positive Data From Part One of Moxie Trial of Omaveloxolone for Friedreich’s Ataxia
Biohaven PharmaceuticalsBIOHAVEN COMPLETES ENROLLMENT IN SPINOCEREBELLAR ATAXIA clinical TRIAL WITH TRIGRILUZOLE
CBS WKTVLocal guitar player with ataxia keeps an upbeat tempo
Biohaven PharmaceuticalsBIOHAVEN’s TRIGRILUZOLE RECEIVES FAST TRACK DESIGNATION FROM U.S. FDA
The SignalTrent Peterson rides across PCT to raise awareness for genetic disease/Ataxia
WFLA News Channel 8Local DJ aims to bring awareness to little-known disease through bowling
The News & ObserverAll-terrain wheelchair gets disabled sportsman back outdoors — Shaffer
The Sunflower’There is no passion to be found in playing small’
Psychology TodayA Wide Range of Mental Disorders May Have Link to Cerebellum
National Institutes of HealthGene silencing shows promise for treating two fatal neurological disorders
CBS PhillyRare Diseases In Crosshairs Of A New Philadelphia Startup
Looping LiveMy Neurological Disorder Doesn’t Stop Me Looping!
The Mapleton PressAtaxia impacts Mapleton woman’s ability to walk and talk
US Financial News TodayAnticipating Next Album Release, Guitarist Ian C. Bouras Continues to Expand His Audience
The Hollywood Reporter‘Bill Nye: Science Guy’: Film Review | SXSW 2017
The North Carolina 100Rare Disease Foundation Marks 60 Years
Lompoc RecordExercise helps hold a rare disease at bay for Santa Ynez man
Genetic Engineering & Biotechnology NewsProtein Trafficking Roadblocks Could Be Cause of Neurodegeneration
Chondrial Therapeutics, Inc.Chondrial Therapeutics Secures Up to $22.6 Million in Series A Financing and Licenses Novel Technology for the Treatment of Friedreich’s Ataxia
VolumeOneShock to the System accepting help, resting, and slowing down are key to managing a chronic illness while raising kids
Gulf TimesResearch sheds new light on brain disorder
Rare Disease ReportBioBlast’s Trehalose Stabilizes Spinocerebellar Ataxia Symptoms
timesunionTeam Led By The Ohio State University Researchers Publish Method in JoVE Video Journal to Standardize Protocol for Testing Mitchondrial Function
NeurologyNowLife Lines: Support groups offer information, advice, encouragement, and community. Use these tips to find the right one for you or to start your own.
NeurologyNowStem Cell Reality: Desperate patients are vulnerable to the promise of stem cell therapy–most of it unproven. Protect your health–and your wallet–with these facts.
RareDRResearchers Discover a New Genetic Disease That Causes Neurodegeneration
RareDRFirst Patient Enrolled in Hereditary Spinocerebellar Ataxia Pivotal Trial
Horizon PharmaHorizon Pharma plc Announces Topline Results from Phase 3 Study of ACTIMMUNE® (interferon gamma-1b) in Friedreich’s Ataxia
University HeraldMark Zuckerberg And Morgan Freeman Hosts Silicon Valley Event Honoring Life Science Scientists – Huda Yahya Zoghbi from the Baylor College of Medicine was awarded for her research on the genetic causes and biochemical mechanisms of spinocerebellar ataxia and Rett syndrome
Today’s TopicTufts researchers uncover possible source of genetic error causing multiple diseases
PeopleVirginia Teacher Plans Surprise Police Escort for Twins with Rare Degenerative Disease: ’My Job Is Bigger Than Teaching Standards’
Check OrphanNHNN neurologist wins top European prize
Check OrphanLocal Family Wants To Educate About Deadly Rare Disease
NewswiseNorthwestern Medicine Scientists Use Advanced Technology to Better Understand a Devastating Neurodegenerative Disorder
AARPAARP recognizes three of the many caregivers who make a difference in someone’s life
EurekAlert!New iPS-cell model system helps develop treatments for spinocerebellar ataxia
San Diego MagazineSan Diego’s Select Working Together
Buffalo NewsMY View: It’s best to take life one day at a time
Capital BayWheelchair-user left stranded by bus driver because child’s buggy was already using the designated space
NewswiseDr. Puneet Opal at Northwestern Memorial Hospital Has Discovered the Genetic Sequencing for Hereditary Ataxias, a Rare Genetic Neurological Disorder
Globe GazetteHayden Despenas scores a touchdown to remember
Residential SystemsIndustry Leaders Create Custom Smart Home for Family in Need
Public OpinionLocal Student hosts Ataxia fundraiser
OC RegisterThese 3 brothers stumble with a rare genetic condition, now they’ll walk to let others know about it
Valley NewsWorth the Weight: North Hartland Woman Lifts to Battle Disease
prwebInternational Ataxia Awareness Day Shines Spotlight on Neurological Diseases
Herald NewsSwansea woman leads walk to raise awareness of Machado Joseph disease, other types of ataxia
Chicago Sun TimesSky to sign La Rabida Children’s Hospital patient to one-day deal
nwfdailynews.comThe roles reversed: Daughters become caretaker for mom after diagnosis
AZcentral.comFrom riding a tricycle to a Harley to a trike
CBC.caAirdrie girls with rare genetic disease see custom home-renovated by volunteers
News-Medical.netHow is Multiple System Atrophy Diagnosed?
NeurologyNowSaving Grace: For Kathleen Gingerelli, 48, a diagnosis of Friedreich’s ataxia finally explained her lifelong clumsiness.
ELLEScientist Are Trying to Ruin Your Red Wine, All the health benefits, none of the fun
BusinessWireAgilis Biotherapeutics Announces FDA Orphan Drug Designation for the Treatment of Friedreich’s Ataxia
Eaglenews onlineWalk for Dave is Aug. 6
the NamibianBravely confronting Friedreich’s ataxia
ABC 9 Local SYRA Walk for Dave Raises Ataxia Awareness
ScienceDailyNew technique targets gene that causes neurodegenerative disease
Arkcity.net Bill Nye the Science Guy: Here to change the world Arkcity.net Captain of ACPD fights rare disease S&A CommunicationsNational Ataxia Foundation names S&A Communications as agency of record
Market WiredAID.org Helps Woman Walk for the First Time in 5 Years
The Scripps Research InstituteScripps Florida Scientists Create Compound that Erases Disease-Causing RNA Defects
Nasdaq GlobeNewswireBiohaven Announces Orphan Drug Designation Request Granted for BHV-4157
Observer-ReporterConcert to aid National Ataxia Foundation
News MedicalResearchers identify new mutation responsible for spinocerebellar ataxia
Stanford MedicineFinding the right doctor and learning to live with a progressive genetic disorder — as a family
BenzingaBiohaven Announces Orphan Drug Designation Request Granted for the Treatment of Spinocerebellar Ataxia
The Journal GazetteRare diseases lacking adequate research
Business WireAgilis Biotherapeutics and Waisman Biomanufacturing Enter Into Exclusive Manufacturing Agreement for Friedreich’s Ataxia Gene Therapy
UT Southwestern Medical CenterScientists find potential treatment for Friedreich’s ataxia
timesunionSaratoga County families highlighted in Rare Disease Movie Night
Press Release RocketIan C Bouras to perform on Feb 20th to raise money, and awareness, for Ataxia
Nature.comSpinocerebellar ataxia type 21 exists in the Chinese Han population
MedicalExpressBreaking the brain’s garbage disposal: Study shows even a small problem causes big effects
Indianapolis Business JournalIndy drug firm scores multi-million-dollar help from NIH
Medical XpressMolecular mechanism responsible for a neurodegenerative disease discovered
Time Warner News Central NYStrumming to a Different Tune, Guitarist Fights Ataxia
The Morning StarLiving with ataxia and sharing awareness
CBCnewsAirdrie girls with Friedreich’s ataxia get home from anonymous donor
Neurology TodayImmunotherapy Leads to Improvements in Some Patients with Autoimmune Cerebellar Ataxia: Which Patients Fare Best?
KDH Pressbox.comFormer Ellison quarterback Eric Christian’s battle with ataxia inspiring new generations of students
News MedicalCardiac monitoring predicts survival in patients with Friedreich ataxia
Guitar PRGuitarist Ian C. Bouras pushes aside Ataxia with new String Endorsement and Upcoming Gigs
ABS-CBN NewsPinoy stars come together to help Bunny Paras’ daughter
ABC7 Los AngelesResearch Offers Hope for Ataxia Patients
University of MichiganCollaborative global study aims to enhance understanding of rare motor disorder
NIHUndiagnosed Diseases Network launches online application portal
medwireNewsLong-term disease progression in spinocerebellar ataxia quantified
NasdaqBioBlast Granted Patent From USPTO for Cabaletta for the Treatment of Spinocerebellar Ataxia (SCA)
Kennebec Journal/Morning SentinelA little understanding goes a long way
SanTan Sun NewsOctober craft fair raises funds to fight the neurological disorder ataxia
medwire newsRiluzole ‘a candidate treatment’ for cerebellar ataxia
Sun Lakes SplashAtaxia Awareness Day fundraiser – October 3
UCSFNew Type of Prion May Cause, Transmit Neurodegeneration Multiple System Atrophy is Described as First New Human Prion Disease Identified in 50 Years
Salina JournalOhio woman raising awareness of disease
The Chaffee County TimesWidow raising ataxia awareness visits Buena Vista
PR NewswireRetrotope announces open enrollment for Friedreich’s ataxia clinical trial
UF NewsProminent award goes to UF researcher Laura P.W. Ranum
Tulsa WorldCollinsville man with Friedreich’s ataxia outliving early-death predictions
Baylor College of Medicine NewsZoghbi receives seven-year Javits award to advance ataxia research
Globe NewswireBioBlast Pharma Receives Orphan Drug Designation From the European Commission for Cabaletta for the Treatment of Spinocerebellar Ataxia (SCA)
RUHR-UNIVERSITÄT BOCHUMRUB-Scientists develop ataxia mouse model Investigating the origins of spinocerebellar ataxia 6 Eye blink conditioning for early diagnosis
New England Patriots Charitable FoundationJohn Mauro of Auburn, Mass. wins third prize of $5,000 for the National Ataxia Foundation
observer-reporterAtaxia: Little-known disorder perplexes doctors and patients
Journal of NeuroscienceSpinocerebellar Ataxia Type 6 Protein Aggregates Cause Deficits in Motor Learning and Cerebellar Plasticity
Pharmacy ChoiceHorizon Pharma plc Initiates Phase 3 Trial of ACTIMMUNE(R) (interferon gamma-1b) for the Treatment of People With Friedreich’s Ataxia
I4U NewsDylan Sutcliffe Becomes Youngest Cleveland Browns Player at 9 Years Old
Auburn, MA DailyMauro tapped for 2015 Myra Kraft Community MVP Award
The AcornGrandmother stays upbeat despite illness
Gainesville.comBuchholz senior overcomes rare condition to graduate
Friedreichs Ataxia NewsResearchers Propose Novel Mechanism for the Treatment of Friedreich’s Ataxia
Friedreichs Ataxia NewsResearchers Suggest New Potential Therapeutic Approach for Friedreich’s Ataxia Based on Incretin Analogs
GuitarPRGuitarist Ian C. Bouras transcends rare neurological disorder with unique musical style
AL.comNo cure, no ‘great treatments’ so far for debilitating neurological condition of ataxia, say UAB doctors
Nature MIDDLE EASTMutation behind neurodegenerative condition identified
Horizon PharmaHorizon Pharma plc Receives FDA Fast Track Designation for ACTIMMUNE(R) in the Treatment of Friedreich’s Ataxia
AL.comPelham musician in grips of neurological disorder vows: ‘I’ll make as much music as I can while I can’
Huffington PostWatch Bodybuilder With Degenerative Disorder Master Competition With Strength, Grace
Midwest MeetingsHospitability Hero
News MedicalStudy finds link between neurodegenerative disorders and inflammation
Medical ExpressResearchers find new link between neurodegenerative diseases and abnormal immune responses
Nasdaq GlobeNewswireBioBlast Pharma Announces Positive in vivo Preclinical Proof-of-Concept Results of Its Cabaletta Platform in Spinocerebellar Ataxia Type 3 (SCA3)
Nasdaq GlobeNewswireBioBlast Pharma Announces Positive Preclinical Proof-of-Concept Results of Its Novel Mitochondrial Protein Replacement Platform in Friedreich’s Ataxia
Arizona Bridge to Independent LivingBOB MICHAELS RECEIVES 2014 SPIRIT OF ABIL AWARD FOR ADVOCACY, CONTRIBUTIONS TO KEEPING INDEPENDENT LIVING PHILSOPHY STRONG
BusinessWireCatabasis Pharmaceuticals to Present at International Ataxia Research Conference
EurekAlert!Cerebellar ataxia can’t be cured, but some cases can be treated
Molecular NeurodegenerationLazarillo-related Lipocalins confer long-term protection against type I Spinocerebellar Ataxia degeneration contributing to optimize selective autophagy
NPRA Man’s Incomplete Brain Reveals Cerebellum’s Role In Thought And Emotion
Baylor College of Medicine NewsMany paths to degeneration for neurons
BioNewsTexasBaylor College of Medicine Researcher Receives Funding for Ataxia Project
CheckOrphanPatient registries: the quiet revolution in rare diseases
7th Space InteractiveRepetitive finger movement performance differs among Parkinson’s disease, Progressive Supranuclear Palsy, and spinocerebellar ataxia
EurekAlert!An ‘ambulance’ for the brain
The New York TimesLaw Creates Special Savings Accounts for Disabled People
Market WiredReata Enrolls First Patient in the MOXIe Study, a Phase 2/3 Study Examining RTA 408 in Friedreich’s Ataxia Patients
Daily Mail.comGirl, 11, with life-threatening illness is crowned ‘Princess Molly’ as city rallies together to make her dream come true
News MedicalNeurological testing accessibility and affordability: an interview with Dr Joseph Higgins
The Grafton VillagerRaising Awareness about ataxia through gingerbread
KUSA-TV Channel 9 NewsColorado teen perseveres in the face of rare illness
telegram.comAuburn chef’s gingerbread castles highlight cause
Auburn, MA Daily“Frozen” Gingerbread Castle Construction Commences
Neurology TodayBest Advances of 2014: Picks from the Neurology Today Editorial Advisory Board
Journal of Clinical InvestigationPurkinje neuron Ca2+ influx reduction rescues ataxia in SCA28 model
Auburn, MA DailyAuburn Chef Building Gingerbread Castle at the Auburn Mall
7th Space InteractiveThe merit of proton magnetic resonance spectroscopy in the longitudinal assessment of spinocerebellar ataxias and multiple system atrophy-cerebellar type
Journal-NewsEvent set to raise money for rare disease
FOX NewsThree brothers with rare neurological disorder raise awareness about debilitating disease
MedscapeCerebellar Ataxia Diagnosis Aided by Exome Sequencing
Market WatchReata Announces the Initiation of Phase 2 Studies Examining RTA 408 for the Treatment of Friedreich’s Ataxia and Mitochondrial Myopathies
Auburn, MA DailyBunny Paras opens up about daughter’s rare disorder
Auburn, MA DailyAtaxia Walks and Rolls to Success
Standard ExaminerHereditary affliction plagues Ataxia sufferers
Auburn, MA DailyMauro Talks Ataxia at AHS
BalitaFamilies to ‘Walk n’ Roll’ on Sept. 20 for ataxia that afflicts many
Journal of Medical GeneticsA novel missence mutation in CCDC88C activates the JNK pathway and causes a dominant form of spinocerebellar ataxia
KARE 11Walk, Stroll, ’n Roll for Ataxia
Auburn, MA DailyGovernor Signs Bill Establishing Ataxia Awareness Day
BioBlast PharmaBioBlast Receives Notice of Allowance from USPTO for Its Novel Fusion Protein-Based Platform for the Treatment of Friedrich’s Ataxia
Aurora SentinelFor rare medical condition, help comes on horseback for Aurora man, others
National Society of Genetic CounselorsSolving the Mysteries of Undiagnosed Diseases
NL News NowMedical trip deemed a success
NORDFrontline Medical Communications and NORD Develop Partnership
Science CodexResearchers find gene critical for development of brain motor center
Benton Evening NewsMinnesota woman running for her father, a Benton graduate
National Institutes of HealthNIH embraces bold, 12-year scientific vision for BRAIN Initiative
NASDAQ OMX GlobeNewswireREGENX Biosciences and Voyager Therapeutics Announce License Agreement
KTIVHealthBeat4: A Siouxland woman is attacking ataxia
CIRMBehind the Bench: One Student’s Mission to Fight Ataxia
Philly.comCheck Up: Spreading the word about rare brain diseases
American Academy of NeurologyIllinois Researcher Receives $130,000 for Ataxia Research Funded by American Brain Foundation and National Ataxia Foundation
Hendricks Pioneer PressNuese runs for ataxia in her dad’s memory
The Lancet NeurologyProgression of early features of spinocerebellar ataxia type 2 in individuals at risk: a longitudinal study
University College London HospitalsRe-activating the Friedreich’s ataxia gene in patients: early promise for a radical treatment
PR NewswireCASIS Payloads Berthed With the International Space Station Through SpaceX Dragon Capsule
Science CodexFriedreich’s ataxia — an effective gene therapy in an animal model
Genetic Engineering & Biotechnology NewsBiogen Idec, Atlas Venture Pump $17M into Ataxion
DRUG Discovery & DevelopmentFDA Fast Tracks Edison’s New Friedreich’s Ataxia Drug
Observer-reporter.comWest Greene senior hopes to change hearts
Worcester NewsYoungster will play sport again with new wheelchair
Auburn, MA DailyAuburn Chef Earns Food Network Nod
Check OrphanFDA Grants Edison Pharmaceuticals’ EPI-743 Orphan Status for Friedreich’s Ataxia
Science CodexFruit flies reveal normal function of a gene mutated in spinocerebellar ataxia type 7
ABC WDAY 6 NewsSpending a day in her chair
EMORYAging brains need ‘chaperone’ proteins
PBRBioMarin to buy Repligen’s pre-clinical compounds to treat Friedreich’s Ataxia
Fort Mill TimesAgilis Biotherapeutics Completes $8 Million Financing to Develop DNA-based Therapeutics for Rare Diseases
Bowling Green Daily NewsCAN-DO ATTITUDE
Yorkshire PostsNew test set to help patients with gluten sensitivity
TelegramTownsAtaxia Group founder prepares for Walk n’ Roll
TelegramTownsBoston taxi accommodations for handicapped appear lacking
EyeOnFitness.comNothing Is Impossible – The Hasan Banks Story
The Riverdale PressSpreading awareness of obscure but deadly disease
The University of Adelaide AustraliaShining light on neurodegenerative pathway
Auburn, MA DailyWalk Or Roll To Support Ataxia Awareness
Central Massachusetts Convention and visitors BureauRide for John: Annual Walk and Roll for Ataxia – Saturday, October 5th
Amsterdam NewsFourteenth annual International Ataxia Awareness Day
NBC 9 NewsBringing more awareness about Ataxia
Rock Hill Herald OnlineDiscovery Shows Cerebellum Plays Important Role In Sensing Limb Position And Movement
The New Zealand HeraldGene breakthrough raises hope for young sisters
The Pharmaceutical Research and Manufacturers of AmericaNearly 450 Innovative Medicines in Development For Neurological Disorders (PDF)
RXmuscle.comHasan Banks Moving Forward!
The Sacramento BeeZoghbi to receive Dickson prize in Medicine from University of Pittsburgh
Sanford ResearchNational Ataxia Foundation, CoRDS announce partnership
Clinical Endocrinology NewsOsteoporosis, osteopenia appear common in Friedreich’s ataxia
OJornalHelping raise awareness about Machado-Disease
MedicalExpressInterferon-beta aids balance and movement in mice with spinocerebellar ataxia 7
Imperial College LondonVitamin B3 shows potential for neurological disease Friedreich’s ataxia
MedicalExpressA little less protein may be the answer in neurodegenerative disorders
Eagle Star — ReviewWalk for Dave
Science CodexA pan-European study: Signs of motor disorders can appear years before disease manifestation
Northwestern UniversityGene Involved in Neurodegeneration Keeps Clock Running
UCLA NewsUCLA stem cell researchers move toward treatment for rare genetic nerve disease
Massachusetts General HospitalMass. General, Duke study identifies two genes that combine to cause rare syndrome
PubMed.govTransglutaminase 6 antibodies in the diagnosis of gluten ataxia.
TelegramTownsNew Subtype of Spinocerebellar Ataxia With Altered Vertical Eye Movements Mapping to Chromosome 1p32
Health Medicine NetworkNew subtype of ataxia identified
Jconline.comCommunity helps raise funds for McCutcheon senior with rare disorder
US NewsScientists Find Way to Turn Stem Cells Into Brain Cells
StatesmanJournel.comWest Salem girl to meet Glee cast on Make-A-Wish trip
The Graham LeaderHernandez marathons to battle disease
UofMHealth.orgScience surprise: Toxic protein made in unusual way may explain brain disorder, U-M team finds
The Wall Street JournalCanadian Safe Step Walk-In Tub. Co. Delivers a Life-Changing Gift In a Big Purple Box to 11-Year Old Girl with Friedreich’s Ataxia
Medical Express‘RNA sponge’ mechanism may cause ALS/FTD neurodegeneration
ANNALS of NeurologyCaffeine and adenosine A2A receptor inactivation decrease striatal neuropathology in a lentiviral-based model of machado-joseph disease
KPLC-TVFaces of Rare Disease: Friedreich’s Ataxia
7thSpace Interactive (press release)Autosomal recessive spastic ataxia of Charlevoix Saguenay (ARSACS) …
mLIVEGabe and Izzy live on: Nationally recognized anti-bullying advocate Gabrielle Ford gets new companion, feature in Woman’s World Magazine
National Organization for Rare DisordersGroups Announce “Move Your Way” Initiative for Rare Disease Day
CheckOrphanEliminating Rare Diseases
NBCNEWS.comStudy: Hundreds of rare disease drugs in testing
CheckOrphanThe Orphan Drug Act at 30 Years: What’s Next?
PHARMABIZ.comEdison Pharma begins phase IIB trial of EPI-743 in patients with Friedreich’s Ataxia
Social Security AdministrationSocial Security Announces New Online Services Available with a my Social Security Account
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