Home
Member Access





Lost Password?
No account yet? Register
join us on facebook
Last articles

Clinical study on HDACIs… By Guy D’Anjou, M.D.

Research report on Late Onset Cerebellar Ataxia (LOCA), by Isabelle Thiffault
 
Quiz
What Do You Know about Ataxia, Claude St-Jean and CAFA?

Film Project

Donate Hbc Rewards points

The Hbc Rewards Community Program allows you to donate your Hbc Rewards points to the CAFA – Claude St-Jean Foundation.

 

What's new?

[July 27, 2010] - The CAFA's Western Branch will participate in two upcoming events: Rehab Expo 2010 and Allies in Health Care.
Rehab Expo 2010 (Seaforth Armouries, 1650 Burrard St, Vancouver, BC; September 14, 2010, 8:00am – 4:00pm). The purpose of Rehab Equipment Expo is to give clinicians and consumers in the community and health facilities access to information needed to make educated decisions regarding the purchase of assistive technology.

Allies in Health Care: 2nd Annual Community & Patient Fair for Health Professional Education (October 28, 2010, 10:00am – 4:00pm) hosted by the University of British Columbia (UBC) as part of Celebrate Learning week.
Allies in Health Care is a one-day event that connects community-based organizations, patient support groups, and individuals involved in these agencies with students and faculty at UBC. The Fair recognizes the unique expertise and role of people in the community in the education of health professionals and promotes meaningful partnerships between UBC and the communities it serves. The Fair will be held in the West Atrium of the Life Sciences Centre, 2350 Health Sciences Mall, UBC Point Grey campus. The event will include displays and representatives from over 30 community organizations, interactive patient panels and other educational activities.

[July 26, 2010] - Notice of vacant positions in CAFA's Board of Directors. Call for nominations.

[June 1, 2010] - Press Release. Santhera’s MICONOS Trial with Catena®/Sovrima® in Friedreich’s Ataxia Misses Primary Endpoint.
Liestal, Switzerland, May 20, 2010 – Santhera Pharmaceuticals (SIX: SANN) announced today that its MICONOS Phase III study evaluating Catena®/Sovrima® for the treatment of Frie-dreich’s Ataxia missed its primary endpoint. Trends towards improvement in the key neuro-logical endpoint were however identified by a meta-analysis of all Santhera’s Phase II and III studies in the same indication. MICONOS also confirmed that Catena®/Sovrima® is safe and well tolerated at doses of up to 2250 mg/day.


[April 13, 2010] - A benefit concert for the CAFA. Robin Grenon (harp), Gisèle Guibord (harp), Guillaume Martin-Laval (drums) & Michel Dubeau (Irish flute and bagpipes) present to you the Celtic Flavors Concert. Sunday May 2nd 2010 at 3 PM in the church La Visitation, 1847 Gouin Bld East, Montreal.
Ticket : $25. Buy now ! 514-321-8684 or This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
   

[February 13, 2010] - Breaking news. CAFA/ACAF announces a Western Branch.
A group in Vancouver BC, now forms the Western Branch of CAFA (the Canadian Association of familial ataxias) Claude St. Jean Foundation/ACAF (Association canadienne des ataxies familiales) - Fondation Claude St-Jean.

CAFA's western branch represents CAFA in the western provinces of Saskatchewan, Alberta and BC and promotes membership and directs funds to research through CAFA to ultimately discover and support treatments for a variety of types of ataxia.

They will work to raise awareness about ataxia, clarify information about the types of ataxias and about CAFA to the western audience, primarily in English. With an English-only web page (housed on the CAFA/ACAF site) they will reach out to those living with ataxia in the west with information, guidance and understanding. Where possible, they also hope to do advocacy work on behalf of individuals with ataxia, and/or advocate for ataxians in general in the community and within the health care system.

While they are not a support group they are happy to refer people with ataxia in western Canada to local support groups.

A bit about CAFA: Claude St-Jean was diagnosed with FA in 1972 and founded CAFA. Originally it only supported people and families with FA. As they became aware of numerous other forms of ataxias it expanded to include all types of ataxia.

>>> http://www.lacaf.org/West/Index.html

logo_JIMR.png[January 26, 2010] - Come back soon for information on activities that will be held in Quebec to celebrate Rare Disease Day, February 28th, 2010. Please, mark this day in your datebook.
The 3rd Rare Disease Day will be celebrated across the world. Follow this link for more information: www.rarediseaseday.org

[January 12, 2010] - Bombardier Aerospace is offering guided tours of its Montreal-area manufacturing and assembly plants to all friends and members of the CAFA. This is a privilege usually reserved only to Bombardier employees and their families.

[January 12, 2010] - SYMPTOMATIC TREATMENT OF ATAXIAS. Anyone with research expertise, or with projects or ideas for the treatment of ataxia symptoms, are invited to submit research suggestions in writing via email (to This e-mail address is being protected from spam bots, you need JavaScript enabled to view it ) or snail mail (to the CAFA office).


   

Dear visitors,

We know that genetic factors influence a large number of familial conditions such as hereditary ataxias.

But what are hereditary ataxias? Why and how do they appear? Are they considered severe and complex? At what age do they manifest themselves and what is the life expectancy? Is there a remedy, a cure, or treatments? Do the afflicted people keep their autonomy? Are ataxias regional, national or international? There are so many questions which deserve answers.

We will share with you our knowledge about several forms of hereditary ataxias in order to better reply to your questions. We will touch on different subjects such as professional care, scholarity, leisure and many others, which will permit you to achieve a better life. We will inform you about the most recent developments in scientific research. In short, lots of information that will comfort you in your need for knowledge.

If you have questions, contact us by email. It will be a pleasure for us to reply.

Good browsing.
 
 thank you Claude
 
  

donateNow2e1.gif

or through
paypal-logo.jpg
 

Upcoming events




*****



*****



Links

Promotional Items
bands-small.png