Adapting to my ataxia
Louise, in her blog post, explains her ataxia journey and reminds us to be inspired by our courageous resilience. My name is Louise, and I was born in Ceredigion, Wales, […]
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SBT-589 may be cardioprotective in FA
On March 19th, the pharmaceutical company Stealth BioTherapeutics presented data on their molecule called SBT-589 in preclinical models of Friedreich’s ataxia (FA) at the Wellcome Trust Conference on Mitochondrial Medicine-Therapeutic
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Anamaria’s ataxia Journey
Here is a snippet of Anamaria’s journey, she shared her story in support of the Rare Disease Day Campaign. My adventure with this condition began at the age of 16,
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Lexeo announces positive results from their SUNRISE-FA trial of LX2006 for FA cardiomyopathy
Lexeo Therapeutics is a pharmaceutical company developing a gene therapy called LX2006 for people with Friedreich’s ataxia (FA) cardiomyopathy (a condition involving stretching, thickening, or stiffening of the heart muscle,
An interview with Netherlands-based PhD researcher Ilse Willemse, on the SPAX app for home monitoring in ARSACS and SPG7 as part of the European PROSPAX project
The PROSPAX (PROgression chart of SPAstic ataXias) project focuses on ARSACS and SPG7, and is a collaboration between neurologists in several sites across Europe and Canada. The overall aim is to gain
LUCKY TO BE LOVED
Here is fantastic blog post from our wonderful Friend, Tallulah. She talks about love and self-worth. As she puts it, “I talk about my own preconceptions, my internalized ableism and
Learning to Accept – Laura
Our friend, Laura, has kindly shared her thoughts with us in support of the Rare Disease Day campaign. She talks about the importance of acceptance and a little about her
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Voyager Therapeutics and Neurocrine Biosciences announce selection of a lead gene therapy candidate for their FA program
On 26th February, the biotechnology company Voyager Therapeutics announced that as part of their collaboration with the biopharmaceutical company Neurocrine Biosciences, they have selected a lead development candidate in their
