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Canadian Association for Familial Ataxias (ACAF)

Claude St-Jean Foundation

Friedreich's Ataxia

 
Canadian Association for Familial Ataxias
(Claude St-Jean Foundation)


“Scientific Research”


In 1972, following an evaluation of his symptoms by Dr. Barbeau (a leader in neurology), Claude ST-Jean is condemned to death. Refusing the diagnostic, he decides to put in place a scientific comity to undertake medical research on the disease named Friedreich’s Ataxia such as described in Dr. Nicholas Friedreich's books in 1882.

En 1974, Claude founded A.C.A.F. Fundraising campaigns became mandatory to assure the financing of all eventual medical research for people showing the same symptoms.


(Near 6 million raised have been invested into research)


We have the right to ask how all the money was invested in medical research? Take a look at this impressive list.

  • Detection-analysis on Canadian families afflicted with ataxia, as well as siblings afflicted in Quebec, Acadia (N.B.) (identification, analysis, of different symptoms and genetic mapping).
  • Molecular Genetic (Friedreich Ataxia + Ataxia Charlevoix-Saguenay + SCA 1, SCA 2, SCA .
  • Genealogic studies on families from Quebec (genetic markers of AF and ataxia Charlevoix-Saguenay (ARSACS).
  • Study on cognitive troubles associated with spastic recessive ataxia of Charlevoix-Saguenay.
  • Study on mutant mice.
  • Biochemistry, metabolism, patho-physiology of diabetes.
  • Clinical projects (experimental trial on amantadine in collaboration with Italy, France and United-States.
  • Maintain AF's clinics in participant hospitals. (Marie-Enfant, McGill, Chicoutimi, Quebec, Sherbrooke, Hotel-Dieu of Mtl).
  • Neurological follow-up.
  • Prenatal services (consultation and diagnostical tests).
  • Evaluation and cardiological/cardio-pulmonary follow-up on AF's patients.
  • Post-Mortem study on iron metabolism at heart level + hepatic study.
  • Metabolic researches, radiological and neurochemical.
  • Creation of a scale on syndromes of spastic ataxia Charlevoix-Saguenay and Friedreich Ataxia.
  • International Workshop on AF. Unification of researches on ataxia with participant countries + International Symposium of the Neurological Sciences Research Center regarding cerebellar functions.
  • Neuro-psychological studies at the Hotel-Dieu of Montreal with AF patients, SCA 1, SCA 2, SCA 3 and ARSACS, aiming to evaluate the different functions of the nervous system such as: concentration, language, memory, attention, verbal and non-verbal memory, coordination and precision of movement.
  • Multi-disciplinary approach on neurology, biochemistry, participation to the discovery of genes, orthopedy, cardiology, orthophony, ergo therapy, social service and professional orientation for persons afflicted with AF.
  • Grant-holder working with ataxic families on genealogy and symptoms on non-identified forms of ataxia.


Medical equipments + professional services

  • Computer technicians (data processing).
  • Programs for data processing.
  • Molecular Probes.
  • Prenatal Diagnostic technicians.
  • Mice.


Social Services

  • Eldorado.
  • Social Activities for ataxics from Montreal, ex: (Christmas party)
  • References and informations on existing services in the outskirts of Montreal.
  • Fund raising campaign and legacy.
  • Annual Subscription Campaign + fund raising activities.
  • Solicitation to companies and wealthy people for major donations.

Office Expenses

  • Salaries (subsidized for many years) + accountant salary.
  • Van (Claude ST-Jean moving about during subscription campaign and others activities. Visits and purchase of supplies.
  • Office stationery.


Results

  • Good identification of Friedreich's ataxia symptoms and good neuro-psychological and physiological knowledge.
  • Wider recognition and better sensitization,
  • Better knowledge of means of transmission in many forms of ataxia.
  • Identification of different forms of ataxia and their genes.
    Discovery of new forms of ataxia.
  • Postnatal diagnosis of ARSACS* and AF.
  • Increment of participant countries pursuing the researches.
  • Better understanding of ataxia at all levels (symptomalogical, chemical, biochemical, genetical, neurological, etc.)
  • Better detection.


Research Centers

  • Clinical Research Institute of Montreal - IRCM –
  • Hospital Marie-Enfant (Neuro-muscular diseases clinic).
  • Hospital Royal-Victoria (diabetes).
  • CHUM of Sherbrooke (DR. Bernard Lemieux).
  • Hospital Sainte-Justine.
  • Institute of Neurology of Montreal (AF cerebral metabolism).
  • Hospital Enfant-Jésus of Quebec.
  • University McGill (ataxia clinic).


We must stimulate research on ataxia with new physicians.

International collaboration is particularly important in research on molecular biology because it is thanks to this collaboration that we will succeed in finding the cause and an efficient treatment.