FA Research Alliance @CureFA_org
FARA's mission is to marshal and focus the resources and relationships needed to treat & cure Friedreich's ataxia (FA). #CureFA curefa.org Downingtown, PA Joined June 2011-
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FARA and @MDAorg are proud to announce a collaborative grant for $300,000 awarded to a team of investigators at @UMassChan. This funding will further research into using novel genetic technologies to treat #FriedreichsAtaxia (FA). Learn more: curefa.org/news-press-rel…
Last week, FARA's CEO, Director of Clinical Operations, & Director of Global Relations visited some of the FA GCC sites in Europe. The FA GCC is an international group of clinical research centers that work together to advance treatments & clinical care for individuals with FA.
How early does FA start impacting the body? We are excited to award a grant to Lucie Hermet at @iNeuroMyoGene to investigate the impact of FA on DRG and spinal cord formation and maturation that occurs during embryonic development and early in life.
Larimar Therapeutics Reports Positive Top-line Data from Phase 2 Dose Exploration Study from 25 mg and 50 mg Cohorts of Nomlabofusp in Patients with #FriedreichAtaxia Click here to read their full press release: bit.ly/49bTrlc
We are excited to award a Graduate Research Fellowship to Shweta Sahni at All India Institute of Medical Sciences (AIIMS) in New Delhi to explore blood-based biomarkers of inflammation in Friedreich's ataxia (FA).
You can now access and view the recording of the Pediatric Research Initiatives in FA webinar on our YouTube channel! ▶️ Watch the Webinar: youtu.be/vrmRQTJl350
We are excited to share a discount code for @UpliftingAth’s upcoming Young Investigator Draft on Feb. 3! Join us as we award Anusha Sivakumar with a $20,000 grant! Use code: RARE35 at checkout for 35% off your ticket price! bit.ly/47R9QLz
The FDA drug label for SKYCLARYS has been updated (2.2). Full prescribing information here: skyclarys.com/docs/skyclarys… Anyone considering medication should discuss the matter with their physician. FARA does not endorse or recommend any particular medication.
Did you know that advancing understanding of cardiac disease in FA is a #FARAGrantProgram priority? LOIs are due Feb. 15. curefa.org
Do you have ideas that will advance our understanding of the #neuroscience systems in #FriedreichAtaxia? This is a priority of the #FARAGrantProgram, and funding is available. LOIs for general grants are due Feb. 15. curefa.org/grant Together, we will #CureFA
Advancing drug discovery is a priority of the #FARAGrantProgram. Apply for funding to develop effective therapies for FA. Priority will be given to genetic, epigenetic, and protein replacement approaches that increase frataxin levels. LOIs due Feb. 15.www.curefa.org/grant
We are excited to announce our collaboration with @UpliftingAth to award Anusha Sivakumar a $20k grant in support of her research on Friedreich's ataxia! Join us in celebrating Dr. Sivakumar at the Young Investigator Draft on Feb 3! #YID24 bit.ly/47R9QLz
Facilitating the drug development process and translational research is a top priority of the #FARAGrantProgram. LOIs are due Feb. 15. curefa.org/grant Together, we will #SlowStopReverse and #CureFA!
Did you know that advancing understanding of the molecular basis of FA is a priority of the #FARAGrantProgram? Apply for funding for research. LOIs due Feb. 15. curefa.org/grant Together, we will #SlowStopReverse and #CureFA!
Wishing you a brilliant new year, filled with inspiration to advance understanding and therapies for #FriedreichAtaxia. Funding is available through the #FARAGrantProgram. curefa.org/Grant AIM due Feb. 1. LOIs for General Research Grants are due Feb. 15. #CureFA!
Happy New Year 2024! May the year ahead be filled with love, laughter, and funding from the #FARAGrantProgram. Learn more at curefa.org/Grant. Applications for the Award for Innovative Mindset (AIM) due Feb. 1. LOIs for General Grants are Feb. 15.
How will you celebrate the new year? Apply today for funding from the #FARAGrantProgram! Learn more about funding opportunities at curefa.org/Grant Applications for the Award for Innovative Mindset (AIM) due Feb. 1. LOIs for General Research Grants due Feb. 15. #CureFA!
Novel intragenic deletion within the FXN gene in a patient with typical phenotype of Friedreich ataxia: may be more prevalent than we think? pubmed.ncbi.nlm.nih.gov/38041144/ Together, we will #CureFA!
Recent progress and applications of small molecule inhibitors of Keap1-Nrf2 axis for neurodegenerative diseases pubmed.ncbi.nlm.nih.gov/38043492/ Together, we will #CureFA.
Make the holidays happy with a FARA grant! Learn more about #FARAGrantProgram funding priorities and opportunities: curefa.org/Grant Applications for the Award for Innovative Mindset (AIM) are due Feb. 1. LOIs for General Research Grants are due Feb. 15. #CureFA!
National Ataxia Found.. @NAF_Ataxia
3K Followers 675 Following Our mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.
Ataxia UK @AtaxiaUK
5K Followers 1K Following Ataxia UK is the national charity for people affected by ataxia, a condition that affects balance, speech and co-ordination. About 10,500 in the UK have ataxia.
Friedreich's Ataxia N.. @Friedreichsatax
1K Followers 39 Following We exist to bring you science, research and clinical news about Friedreich's Ataxia. We are a free digital publication dedicated to the patient community.
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R. F. B. @RFB1660107
18 Followers 62 Following Mám #FriedreichsAtaxia a chodítko jménem Karlička. VAROVÁNÍ! Jsem strašně paličatá, a když na mě někdo zadupe, schválně neuteču. Doma to raději nezkoušejte...
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5K Followers 1K Following Ataxia UK is the national charity for people affected by ataxia, a condition that affects balance, speech and co-ordination. About 10,500 in the UK have ataxia.
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1K Followers 39 Following We exist to bring you science, research and clinical news about Friedreich's Ataxia. We are a free digital publication dedicated to the patient community.
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Chelsea E Macpherson,.. @ChelseaMacDPT
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866 Followers 1K Following “You’ve got to earn your stripes.” -Cerebellum (tweets are our own)
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831 Followers 1K Following Professor of Molecular Medicine @UniNorthants researching neurodegenerative & neuromuscular disorders. I like RNA. 🔬
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386 Followers 8 Following
International Congres.. @icar_ataxia
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Just in time for Rare Disease Day, patients with a rare neuromuscular disorder got their first medicine as the @US_FDA approved @ReataPharma’s omaveloxolone. hubs.li/Q01DM0bB0 #lifesciences #biopharma #biospace
Shout out to our two amazing grad students (@KimLuttik & Victor Olmos) sharing their research at #ICAR2022. If you're also at the conference, go check out their posters!
#Cerebellar non-motor circuits and functions in #ICAR2022 - fabulous plenary session. Gratifying to see these exceptional work investigating cognitive and behavioral #cerebellum! #CCAS #SchmahmannScale #cerebellum #reward #impulsivity #compulsivity
ALERT!!!! Action shot of the fabulous @SciencePup presenting her work on CRISPR gene-editing to treat Fmr1 CGG knock-in mice! Bonus points if you can spot our fearless PI at the table as a co-chair for the session!! #ICAR2022
My main takeaway from this session was that all talks should have a kahoot competition. Congratulations @donofrio_sarah for your rightful win! #ICAR2022 @SCAsource
In a standout session from Day 1 of #ICAR2022, a panel of patients discussed their experiences with #Ataxia in front of an audience of researchers. (1/3) @icar_ataxia
The amazing Dr. Nina Schor, Deputy Director of NIH, opening the International Congress of Ataxia Research @ICAR_2022
Understanding non-motor functions and factors that govern differential vulnerability in the cerebellum will help to inform preclinical therapy development, from CRISPR to small molecules, and provides important considerations for imaging studies. #icar2022 ataxia.org/scasourceposts…
#ICAR2022 International Congress on Ataxia Research. Largest ataxia conference ever. Cerebellum and cognition session. With Drs Louisa Selvadurai, Gabriella Bolzan, Peter Tsai, Sheeba Anteraper, Sheng-Han Kuo. Autism, impulsivity, neuropsychology & neuroimaging of CCAS in ataxias
Good afternoon from Dallas at #ICAR2022! Ataxia researchers from around the world have joined cohosting organizations NAF, @CureFA_org, and @AtaxiaUK. To kick off the conference, NAF's Executive Director Andrew Rosen gave opening remarks.
Dr. Sillitoe is happy that #ICAR2022 has started!
Inspiring and so important to hear testimonials of those who live with rare disease. There is so much work to do+ #ICAR2022
Thanks Carol, Keenan, Susan, Stella and Grace for sharing your personal experiences! #ICAR2022
So happy to be at #ICAR2022! As someone who studies ataxia in the lab, it is incredibly meaningful to me to attend a panel discussion by ataxic patients about their journey. Great keynote talk by Nina Schor as well!
We're at #ICAR2022 hearing the powerful and moving testimonies of #ataxia patients, Keenan, Stella, Grace and Carol, their diagnostic journeys, their symptoms and the hope that research gives them #RareDisease #friedreichsataxia @CureFA_org @AtaxiaUK @NAF_Ataxia
#ataxia researchers like me learn so much from people with ataxia. Thanks to today’s impactful panel members at the ICAR international conference for teaching us! @NAF_Ataxia @CureFA_org
Tickets are still available for our Cure FA game this Saturday 10/22! Make sure to come out and support!🦅 #USIBaseball #CureFA
Check out our new publication on #diabetes in #FriedreichsAtaxia authors.elsevier.com/a/1eq2hcOiQO0s4 1/5 🧵
Thanks to @TamaroffJ for leading this important work, and to individuals with #FriedreichsAtaxia for enrolling in the FACOMS natural history study and helping us learn to better manage #diabetes in FA @CureFA_org
Check out our new publication on #diabetes in #FriedreichsAtaxia authors.elsevier.com/a/1eq2hcOiQO0s4 1/5 🧵
A privilege to be invited to the 2nd FARA NSW Gala evening, with Sara and @AmyJHulme representing the Dottori lab and our research @ihmri @uowresearch. A key fundraising night for Friedrich’s ataxia research @CureFA_org #FARA
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