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Latest news on Friedreich's Ataxia research
Updated results from clinical trials and research initiatives
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“From what our members tell us, there is a big need for the guidelines. Covering a wide range of topics including genetic testing, occupational therapy, and palliative care, we hope that any professionals with an interest in ataxia will take up the offer of a free copy.”
The guidelines have been drawn up with the help of neurologists, geneticists, and experts in other disciplines including speech and language therapy and physiotherapy. For the first time the guidelines have a section on occupational therapy that is accredited by the College of Occupational Therapy.
Dr Harrison said, “Improving treatment and care for people with ataxia is one of our main aims as a charity, along with funding research and supporting people who live with the condition. Although we are not a big charity, we believe the professional standard of our new guidelines shows that smaller groups can still influence and improve care.’
Ataxia UK also aims to roll out a system of accredited Ataxia Centres round the UK, and has just opened the third in Oxford. The model offers specialist clinics with neurologists and support from a dedicated Ataxia Nurse, with the aim of providing integrated care and referrals for ataxia patients.
• Ataxia means ‘lack of order’. People with ataxia have a type of degenerative neurological disorder that affects walking, speech, and co-ordination. Over 10,000 people in the UK have ataxia and there is currently no cure. A recent study showed that just 7% of the public know what ataxia is.
• Ataxia UK is the national charity for people affected by ataxia, providing support services and funding ground-breaking research. In the past five years they have spent over £3 million on research into treatments and a possible cure for ataxia, with several important breakthroughs. Charity no: 1102391 www.ataxia.org.uk
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.
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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.