Activities and events

Following are the major activities or past events in 2020

 

Special thanks to the team: Katherine, Steve, Nadine, a real estate agent from Lac St-Jean, Pro-Style Lettrage company and the supporters who have purchased their sticker.

Lets continue to encourage Katherine to reach the objective of 5000 stickers. Help us by ordering your “Ca va bien aller” sticker via Katherine’s Facebook page .

Congratulations to Katherine Samson, mother of two children with ARSACS, for her great initiative! More than 400 stickers “Ça va bien aller” sold already to finance ARSACS research. You can order your $5 sticker via Katherine’s Facebook page. Thanks to Katherine and to all of you for supporting ARSACS research.

Patients from 21 different countries are registered in the International ARSACS Patient Registry. ARSACS is around the world. See map of the country of the registered patients.

The Foundation would like to thank all anonymous donors who celebrated Rachelle’s birthday with a donation to support ARSACS research.

The next meeting of the Foundation’s Board of Directors will be held in Montreal on Thursday June 4, 2020.

Dr. Cynthia Gagnon, member of the ARSACS research team, has designed with her colleagues a new set of measurements to track the ARSACS symptoms. This new index called DSI-ARSACS will help to better assess how the disease is progressing and will provide the means to compare different groups of patients. There is now a reliable and standardized test, an essential element in conducting clinical trials.  Article published in the SCA Source.

This is a special invitation to researchers interested in ARSACS to submit their research proposal by Friday May 22, 2020. A maximum of $100,000 for a period of one year with possibility of renewal for a second year. An application for a specific project could include several labs in Canada or elsewhere. In such a case, the $100,000 limit would not apply.

Each year, the Foundation offers annual research fellowships to advance the understanding of the disease and lead to a treatment. So send your proposal and required documents . Application and Appendix


Deadline to send your proposal: Friday May 22,2020.

The “Diner des Producteurs 2019” will be part of the Télé-Québec TV program “Un Chef à la Cabane” , Friday, February 14 at 8:00 pm. Behind the scene, the preparation of this annual benefit event with guest chef Pierre Gagnaire at work.

Thank you to the individuals who have responded to the email sent requesting to confirm or update their data in the ARSACS Patient Registry. If you did not have a chance to respond yet, please send an email to administrator@arsacs.com to confirm or update your data. It would be greatly appreciated. By being registered, you will be informed of any major developments and the possibilities of clinical trials. In addition, this registry builds an international network with all the positive impacts i.e. creating greater awareness of the disease, increasing research funding opportunities and generating interest from researchers and pharmaceutical companies.

Furthermore, if you or a family member has received an ARSACS diagnostic and are not registered, you are invited to do so. It is easy and simple. Go to https://www.arsacs.com/registry/

A new version of the ARSACS reference article in the GeneReviews is now available.