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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!
Anyone can experience some form of ataxia. In Western-European populations, one out of 90 people carry Friedreich ataxia’s gene mutation; in Quebec, nearly one in 50 are carriers. Although there are treatments for the symptoms, there is no cure for ataxias, yet. Notwithstanding, there is a new research project aiming at treating the cause rather than the symptoms of Friedreich ataxia – the most severe and most common of all ataxias – .
More than ten years ago, September 25 was chosen as the International Ataxia Awareness Day. On this very day, associations for the support of people with ataxia in several countries from The Americas, Europe and Oceania organize awareness events. This year, people suffering from different forms of ataxia will get together, notably among cities in Quebec – Montreal, St-Jean-sur-Richelieu, Granby, Sherbrooke, Drummondville, Trois-Rivières and Quebec City – where they will join local media to raise ataxia awareness. Claude St-Jean’s challenging walk will culminate the campaign next September 25 at Angrignon Park. About 200 people – those with ataxia, their families and friends, healthcare providers, and those who sympathize with the cause – will meet to pay tribute to those who, day after day, fight against hereditary ataxias, and to raise funds for medical research.
CAFA is pleased to invite members of the media to attend the following activities:
Friday, September 24, 10:30 – Information Booth (Jessica Laneuville)
Centre Les Rivières (au milieu) 4225, boul. des Forges, Trois-Rivières (Québec) G8Y 1W2
Saturday, September 25, 13:00 – Claude St-Jean Challenging Walk
Parc Angrignon 3400, boul. des Trinitaires, Montréal (Québec) H4E 4J3
Source: Jean Phénix, Adm.Mger.
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.