Joomla gallery extension by joomlashine.com
Main Promo Images
Latest news on Friedreich's Ataxia research
Updated results from clinical trials and research initiatives
Friedreich's Ataxia fundraising activities and staying in touch
Participate and stay informed about our fundraising events. Take part in our Facebook community with FA patients, relatives, researchers and friends from all around the world!
Sixteen patients with cerebellar disease were included, 10 with cerebellar degeneration (idiopathic disease, SCA2, SCA6, or autosomal dominant cerebellar ataxia) and 6 with degeneration of the afferent pathways (Friedreich ataxia, sensory ataxic neuropathy caused by POLG mutations, and 1 case of idiopathic cerebellar ataxia with sensory neuropathy).
Patients were evaluated at 8 weeks prior to intervention, immediately prior to intervention, immediately after intervention, and 8 weeks after intervention (denoted E1, E2, E3, E4).
As described by the authors, the strategy of the intervention was “to activate and demand control mechanisms for balance control and multijoint coordination,” and to train the patients' ability “to select and use visual, somatosensory, and vestibular inputs.” Training consisted of 3 1-hour sessions per week for 4 weeks, followed by at-home solo exercises during the follow-up period.
Significant improvements from E1 to E4 in SARA (scale for the assessment of ataxia) scores were seen in patients with cerebellar degeneration, and from E1 to E3, but not E4, in patients with afferent pathway degeneration. Patients with cerebellar degeneration also significantly improved after treatment on several quantitative measures of gait, while patients with afferent degeneration did not. Improvement on SARA for the group as a whole was 5.2 points, equivalent to a functional restoration of 2 or more years of disease progression.
“For both groups, continuous training seems crucial for stabilizing improvements and should become the standard of care,” the authors state.
An editorial by Susanne Morton, PT, PhD, and Amy Bastian, PT, PhD, accompany the study.
Intensive coordinative training improves motor performance in degenerative cerebellar disease
W Ilg, M Synofzik, D Britz, S Burkhard, MA Giese, L Schols
E-MOVE Editor: Richard Robinson, NASW, WE MOVE
If you feel like reading an unputdownable novel while collaborating with a just and solidary cause, "The Legacy of Marie Schlau" is your book! 100% of all funds raised will be dedicated to medical research to find a cure for Friedreich's Ataxia, a neurodegenerative disease that affects mostly young people, shortening their life expectancy and confining them to a wheelchair.
The life of Marie Schlau, a German Jewish girl born in 1833 hides great unsolved mysteries: accidents, disappearances, enigmas, unknown diagnoses, disturbing murders, love, tenderness, greed, lies, death ... alternatively a different story unfolds every time and takes us closer to the present. Thus, there are two parallel stories unravelling, each in a different age and place, which surprisingly converge in a revelatory chapter.
Paperback and Kindle versions for "The legacy of Marie Schlau" available for sale at Amazon now!
Currently, BabelFAmily is financing two promising research projects aimed at finding a cure for Friedreich's Ataxia. Whenever you make a donation to us or purchase a copy of "The legacy of Marie Schlau", this is where all funds raised will be devoted to:
1) Gene Therapy for Friedreich's Ataxia research project:
The project is the result of an initiative of Spanish people affected by this rare disease who are grouped in GENEFA in collaboration with the Spanish Federation of Ataxias and the BabelFAmily. The Friedreich’s Ataxia Research Alliance (FARA), one of the main patients’ associations in the United States now joins the endeavour.
2) Frataxin delivery research project:
The associations of patients and families Babel Family and the Asociación Granadina de la Ataxia de Friedreich (ASOGAF) channel 80,000 euros of their donations (50% from each organisation) into a new 18-month project at the Institute for Research in Biomedicine (IRB Barcelona). The project specifically aims to complete a step necessary in order to move towards a future frataxin replacement therapy for the brain, where the reduction of this protein causes the most damage in patients with Friedreich’s Ataxia.
The study is headed by Ernest Giralt, head of the Peptides and Proteins Lab, who has many years of experience and is a recognised expert in peptide chemistry and new systems of through which to delivery drugs to the brain, such as peptide shuttles—molecules that have the capacity to carry the drug across the barrier that surrounds and protects the brain. Since the lab started its relation with these patients’ associations in 2013*, it has been developing another two projects into Friedrich’s Ataxia.