Wednesday
Oct022013

Choice in Supports for Independent Living (CSIL) Meeting

If you are thinking of applying for CSIL or just want to learn more about it then mark Sat. Nov. 16th on your calendars.

On this day both CAFA West (Canadian Association of Familial Ataxia's) and the BC Ataxia Society have joined forces to welcome a special speaker - Paul Gauthier - founder of CSIL (Choice in Supports for Independent Living) 

Choice in Supports for Independent Living (CSIL) is a self-managed care option for home support services where funds are provided to eligible clients to purchase and manage their own home support services. 

 Paul will be discussing the latest policies of CSIL. He will be able to explain the process of applying for CSIL, eligibility, funding, procedures and who can/can't be hired. To be eligible a person must require personal care every day and qualify for home support under the different Health Authorities. Under this plan you become your own 'employer' and have more control and flexibility on the who/when/what of your needs. This is a government funded program. You have to be 19 or older to be eligible. People with developmental disabilities are also eligible if they need personal care.

At this meeting we welcome all interested persons of all disabilities and/or those who are wanting to learn more about the CSIL program.

NOTE:It is NOT limited to ataxians.

  Please feel free to invite anyone you know who may benefit by it however please RSVP.

As mentioned, the meeting will be held on Saturday, November 16th. It will be from 1:30 – 4:30 at the Caring Place in Richmond www.richmondcaringplace.ca. There will be refreshments available.

It is imperative that we receive an RSVP to know room size/setup, amount of refreshments and for Paul to know how many to prepare for.

Hope to see you there!
Tuesday
Jun252013

Annual General Meeting - 2013

As many of you are aware, the President of the BC Ataxia Society lost her husband this year so is now in the process of packing and moving.

Because of this the Annual General Meeting has been postponed from June to September. An exact date and location will soon be posted.

Our June 29th meeting will still be held at 1:00 PM at the Richmond Caring Place. It will be a general support meeting with all welcome to attend. (pls. RSVP if you plan to attend).

Thank you for your understanding.

Thursday
Mar072013

CATENA

Unfortunately we have recently learned that the drug CATENA (idebenone) will be withdrawn from the marketplace at the end of April.  The withdrawal is not the result of a specific safety concern and CATENA will continue to be available during this period.  The delayed withdrawal allows patients taking CATENA time to meet with their physicians to identify other therapeutic and management options.

As long as CATENA is available Santhera will continue to provide the services of the CATENA Support Program, as well as medical information services for physician inquiries.

Click here to read more about it.

The BC Ataxia Society is very disappointed with this news. We have thoroughly enjoyed working with Santhera and thank them for their hard work.

Thursday
Mar072013

NEXT MEETING

I am so sorry to not keep you updated.  The BC Ataxia Society had a meeting in September and again in November. Unfortunately I as  President have been AWOL and did not attend the last meeting. The shoe was on the other foot when my husband became ill last summer. I found myself becoming HIS caregiver. Unfortunately my husband passed away in January.

Having lived with Ataxia I have learned that I cannot stop Living - I learned that I just needed to live it differently. So once again I am being put to the test - with the loss of my husband and best friend I need to live my life differently but not stop living.

That being said, there are many people with ataxia who need our support. So our next support group meeting will be:

Saturday March 23, 2013                                                                                                                Richmond Caring Place                                                                                                                               1: 30 - 4:30 PM                                                                                                                                     Room 345

Please contact us if you plan to attend.    

We hope to see you there!                                                                                                                                           

 

Monday
Sep102012

Canadian Ataxia Conference

The first canadian ataxia conference is being held in London, Ontario on Sat. Oct 20th, 2012.

It is all day event being hosted by the Canadian Association of Familial Ataxia's (CAFA).

For more info please click HERE.