BC Ataxia Society

01/29/2021

Head to Ataxie Ataxia Canada! We'll keep you up to date with the latest research developments and ataxia-related news and content.🔬🧑‍🔬 Check out our latest posts!

👨‍👩‍👧‍👦It’s almost time for the Ataxia BC Society monthly support meeting now offered by Ataxia Canada! As you know, Ataxia BC Society joined Ataxia Canada earlier this year. As our missions aligned, a decision was taken to unite both organizations. As a result, we now invite all English-speaking Canadians to join the support meetings!👨‍👩‍👧‍👦🇨🇦

Join us tomorrow Saturday, January 30th at 10:00AM PST (1:00PM EST). To join, please email use at ataxie@lacaf.org with “Monthly Support Meeting” in the subject line.📨

This month, special guest Dr Antoine Duquette, neurologist and clinical researcher at Montreal’s CHUM involved in the Collaborative Clinical Research Network for Friedreich’s Ataxia, will be joining the support group! His valuable insight as an expert studying neurological illnesses will bring an informative angle to the meeting and will allow you to discuss more about the science and ongoing studies.

We’ll see you there!👋

01/25/2021

Head to Ataxie Ataxia Canada! We'll keep you up to date with the latest research developments and ataxia-related news and content.🔬🧑‍🔬 Check out our latest posts!

Elle a «entraîné des réductions des hospitalisations de 25% […] et des décès de 44%», d'après l’étude COLCORONA.

01/09/2021

Head to Ataxie Ataxia Canada! We'll keep you up to date with the latest research developments and ataxia-related news and content.🔬🧑‍🔬 Check out our latest posts!👇

📣Creating an Open Science Repository of Induced Pluripotent Stem Cells for ARCA1🧬🔬

The main aim of the grant is to democratize access to induced pluripotent stem cells (iPSC) of patients and to foster research in the cerebellar ataxia field. We hypothesize that a human tridimensional (3D) model of ARCA1 made from patients' cells will allow screening for therapeutics using a more representative human-based model. This will be tested with the following objectives:

1) To produce iPSC cell lines derived from 3 ARCA1 patients, bearing the most frequent mutations in our cohort of patients, and from control cells in which SYNE1 gene mutation will be corrected through molecular biology techniques. These cell lines will be made freely available for the research community through an open science approach.

2) To establish an innovative human-based (3D) in vitro cerebellar organoid model of ARCA1 to pilot a proof of principle experiment for therapeutic screening using this model.

The plan is to produce iPSC cell lines through the IPSC-Quebec platform (CHU de Québec-Université Laval) and to make them available to the research community through the C-Big platform at the Montreal Neurological Institute (MNI, McGill). To establish the cerebellar organoid model of ARCA1, we will capitalize on our expertise in biomodelling of tissues (Canada research chair) and of neurological diseases at the Tissue Engineering Laboratory (LOEX) Research Center.

Through this project, we propose to increase resources available to researchers in the field of ataxias, which will benefit the ataxia research community. It is very likely that many ataxia investigators will want to test their specific research hypothesis using cells. In addition, new investigators are more likely to consider investigating ataxias' specific question if they can easily access research resources.

01/06/2021

Head to Ataxie Ataxia Canada! We'll keep you up to date with the latest research developments and ataxia-related news and content.🔬🧑‍🔬 Check out our latest post!👇

When Karen Braitmayer and her husband were looking for their first home together they knew Karen had particular needs as a wheelchair user and found a house ...

01/05/2021

01/05/2021

01/05/2021

Head to Ataxie Ataxia Canada! We'll keep you up to date with the latest research developments and ataxia-related news and content.🔬🧑‍🔬 Check out our latest post!👇

Hey Friends and family! As you all know I was able to get a wheelchair accessible van through DRES and a fundraiser we did. Thanks again to everyone who contributed and helped, we could not have done it without your generosity! I am now getting a power chair through AADL after waiting for a yea...

01/04/2021

Head to Ataxie Ataxia Canada! We'll keep you up to date with the latest research developments and ataxia-related news and content.🔬🧑‍🔬 Check out our latest post!👇

🧬🔬There are excellent measurement tools available to quantify the neurological involvement in Friedreich's ataxia (FA). Unfortunately, several elements of these measurement tools rely on patients' ability to walk or stand, which limits their usefulness when the disease is advanced, and patients no longer walk. Furthermore, the measurement of eye movements is not yet one of the items measured by the scales, even though it has been shown that certain abnormal movements evolve with the progression of the disease. The technological development of virtual reality headsets could allow the introduction of precise measurement tools in clinical settings, at low cost.

This project aims to develop virtual reality tools to better measure the neurological damage associated with Friedreich's ataxia, more specifically the function of the arms and the control of eye movements.

Clinical trials to support the market entry of potential treatments rely on measurements whose accuracy could be improved. The development of other disease progression markers such as upper limb movement measurement and eye movement measurement could thus open the door to several candidates who were previously excluded and thus ensure better representation of patients at all stages of the disease in clinical trials. Eventually, these same tools could be used in the same way in other hereditary ataxias.

01/02/2021

We can finally put 2020 behind us! Happy new year from the Ataxia Canada team.🥳🎉🎆 Looking forward to a new year full of hope and discoveries.😊

Please like and follow Ataxie Ataxia Canada on Facebook! We'll keep you up to date with the latest research developments and ataxia-related news.

01/02/2021

📣We are happy to welcome Ataxia BC members to the Ataxia Canada organization!🇨🇦 After some discussions with the executive team at Ataxia BC it became clear that our missions are aligned, and we would be stronger under one organization. BC Ataxia Society has now been dissolved and all members are invited to join us at Ataxie Ataxia Canada by registering for free.
Register now👉 https://lacaf.org/en/act-to-help/membership/

Don’t forget to like and follow us on Facebook👇
https://www.facebook.com/ataxie.canada
Also check out our Instagram feed and follow👇
https://www.instagram.com/ataxiacanada/

For the past 4 years, we’ve been working diligently on being a more bilingual organization and have welcomed board members from multiple Canadian provinces. Ataxia Canada also has a working relationship with FARA (Friedreich’s Ataxia Research Alliance, USA), NAF (the National Ataxia Foundation, USA), Ataxia UK, FARA Australia, AFAF (French FA association).

We are happy to join forces with other likeminded and dedicated individuals. The members at Ataxia BC have always held a support group and have now migrated to Zoom meeting because of the pandemic. We will keep the meetings going but they will now be open to all English-speaking Canadians. The next meeting will be held on Saturday January 30th, at 1 pm PST (4 pm EST). You can register to join by sending us an email at ataxie@lacaf.org with the subject line “zoom meeting confirmation”.

08/26/2020

Virtual Monthly Meeting on Saturday August 29 @ 1:30 PM

06/27/2020

Annual General Virtual Meeting
Saturday June 27 @ 1 PM

02/28/2020

Next meeting: Saturday February 29 from 1:00-4:00 pm at the Surrey City Centre Library in Surrey (Room 402)

01/24/2020

Next Meeting: Sat, Jan 25th at 1pm at City Centre Library in Surrey (Room 402).

01/17/2020

To all those asking, a memorial for Shannon Burt Connors' life is tentatively scheduled for Saturday, Feb. 1st. Details to come.

01/13/2020

BCAS is extremely sad to announce the passing of our President Shannon Burt Connors after a brief but courageous battle with bone marrow cancer.

Plans for a memorial service are being made, please reach out to her son Trevor (trevorconnors@gmail.com) to be notified. Thank you and thanks to Shannon for all she’s done for BCAS over the years. ❤️

11/28/2019

Sorting Purdy Fundraiser order. We surpassed our goal and reached over $3500 raising $900 for Ataxia Research (at KPU in BC) plus various donations. Thank you to all who contributed in one way or another. :)