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Next Meeting and AGM

BCAS — Tue, 17 Apr 2012 23:16:48 +0000

Our next meeting will be on Saturday May 5^th from 1:00 - 4:00 in rooms 345/350 at the Richmond Caring Place.

As of now it is an Open Support Group meeting. Please let us know if there is anything in particular that you would like to discuss.

The positions of President and Vice-President will be up for nomination and election at our AGM in June. The term runs from Sept. to June as we are on hiatus for July and August. Please consider your nominations.

Note: only current and active members are allowed to nominate/vote.

Our AGM will be held on Saturday June 9^th also in room 345/350 at the Richmond Caring Place. However, there are no rooms available until 1:30 so PLEASE NOTE that our meeting will be from 1:30-4:30. Further details will follow.

Please RSVP if you plan to attend either/both of these meetings.

Thanks!

BCAS Meeting - Sat. March 10th

BCAS — Thu, 01 Mar 2012 20:34:26 +0000

As stated earlier, our next BCAS meeting will be on Saturday March 10th at the Richmond Caring Place. It will be held from 1:00 - 4:00PM.

With tax time fast approaching, Jason Stratman of Enabled Financial will be our guest speaker.

Enabled Financial is in the business of making sure that people with chronic medical conditions get everything that they are entitled to in the form of the Disability Tax Credit. The Disability Tax Credit is based on income tax a person has paid previously and is currently paying. It's the individual taxpayer's money, not the government's money. Many individuals and families have only a vague idea of the federal government benefits they may be entitled to, and many of those individuals may have been told they do not qualify. There are even more people who have never heard of the Disability Tax Credit, what it can do for them, and are probably not aware that it is retroactive for up to ten (10) years. Many Disability Tax Credit claims are denied due to technicalities or lack of pertinent information. Enabled Financial Solutions Ltd. solves this problem because they act as advocates between the individual client, their doctors, and the Canada Revenue Agency. Depending on each unique situation, the client may be entitled to the Caregiver Tax Credit and the Medical Expenses Tax Credit, in addition to the Disability Tax Credit.

For more information on the company please visit: www.enabledfinancial.ca

Seating will be limited for this meeting so please RSVP to info@bcataxia.org if you plan to attend. A light luncheon will be served.

Thanks

Vancouver Leisure Fair

BCAS — Thu, 01 Mar 2012 20:11:41 +0000

There will be an upcoming Leisure Fair on Tuesday April 3rd at the Trout Lake Community Centre in Vancouver for children and youth with disabilities. Please read the following brochure for more info.

Canadian Neuromuscular Disease Registry

BCAS — Thu, 01 Mar 2012 19:24:09 +0000

The Canadian Neuromuscular Disease Registry is a Canada wide registry of people diagnosed with a neuromuscular disease. If you choose to register with the CNDR, your doctor will submit information each time you visit. Please read the following information to consider whether or not you choose to submit. (click to enlarge image)

Home Adaptations for Independence Program

BCAS — Sat, 11 Feb 2012 00:54:31 +0000

The following is a new program by BC Housing. It is available for homeowners, tenants and landlords to help make their home safe and accessible.

The Home Adaptations for Independence (HAFI) program helps low-income seniors and people with disabilities finance home modifications for accessible, safe and independent living. For more information, visit BC Housing’s website or call 604.646.7055.

March Meeting

BCAS — Sat, 11 Feb 2012 00:05:40 +0000

The next meeting of the BC Ataxia Society will be held on

Saturday March 10th from 1:00 - 4:00 PM at the Richmond Caring Place.

A speaker is to be confirmed and info will soon follow.

Thanks!

January Meeting

BCAS — Fri, 30 Dec 2011 20:20:16 +0000

HAPPY NEW YEAR! I hope this year finds us closer to a cure for Ataxia giving us all the hope and courage it takes to live with this horrible disease.

To help celebrate a new year we have a meeting booked for January of 2012.

It is on:

SATURDAY JANUARY 14th from 1:00-4:00 PM in Room 345 at THE RICHMOND CARING PLACE.

We will discuss living with Ataxia and how we each 'cope'.

Hope to see you there!

BCAS UPDATE

BCAS — Thu, 01 Dec 2011 19:45:40 +0000

Wow - Christmas is almost upon us! I want to update you on BC Ataxia Society activities but first I have a few updates that I want to let you know about.

The BC Ataxia Society has recently updated and ordered new brochures. To save costs we ordered half of them in colour with the others in black on white. Please let us know if your neurologists' office needs copies.

We also generously received a donation from Santhera Pharmaceuticals and want to again thank them for their continued support.

Last of all, our submission for Catena is still awaiting submission. As some of you may be aware, Santhera Pharmaceuticals underwent a corporate restructuring this summer which delayed their progress when resources became scarcer. They now have a draft that will be finalized over the next several weeks. I will keep you updated as to when the submission is sent.

Now for our BCAS activities. Each year we have a great time at our annual Christmas Party. Unfortunately this year we will be having no party or christmas gathering. I know - it's sad and I'm very sorry. I have not been feeling well for the past while and simply did not have it in me to organize such an event and other executive members have a full plate with caring for an elderly parent. Thankfully though, I am now feeling much better but with it being December already I am so far behind in personal Christmas plannning. Unfortunately, we all know the energy level of those with ataxia!

Need ideas for your Santa Wish List? Check out our on-line store.

I would like to take this opportunity to wish everyone a very Merry Christmas and all the best in the New Year.

We will meet again in January - either in a meeting room or local restaurant. If you want/know of a location in your area, please do not hesitate to let us know. Also if you have a request or idea for a speaker or a discussion to add to our agenda please let us know of that too.

Don't forget to use our new 'Discussion' page on our website to discuss this or any other ataxia related issues.

Again, Merry Christmas and I hope to see you in the new year!

Fundraiser

BCAS — Thu, 01 Dec 2011 19:18:26 +0000

The BC Ataxia Society fundraiser in October was a great success. It was held at Legends Pub in Richmond and ticket price included a pasta buffet. It’s always nice for us to get out and socialize outside of our meeting.

Our 50/50 draws were won by Meagan (Server) and Christine Ng (BCAS)

Our raffle winners were as follows:

Sterling Silver Chain and Red Coral Pendant

Donated by Taraxca Jewellery – value $70

Won by BCAS member JOHN NG

2 Crystal Wine Glasses (Hadeland Glassworks Norway)

Donated by BCAS members Janet & Sam – value $50

Won by BECKY (SERVER)

Hand Blown Glass Wine Goblet and Stopper/ Bottle of ‘Burrowing Owl’ Syrah Wine

Donated by Tara Pawson (A Glass Act Glassblowing - Vancouver) & Colin Pawson – value $120

Won by BCAS member GARY DAHL

Scrapbook & Cardmaking Stamps, Stamp Pad & free Technique Class/ $15 On-Line Gift Card

Donated by Marlene Peters (Stampin Up) and Lacintha Naidoo (The Paper Passion) – total value - $60

Won by BCAS member LILIAN ISAACS

Orchid Plant donated by BCAS member Francis Lau – $25.00

Won by COLIN PAWSON (BCAS)

Orchid Plant donated by BCAS member Francis Lau – $25.00

Won by BCAS member LILIAN ISAACS

Orchid Plant donated by BCAS member Francis Lau – $25.00

Won by BCAS member LILIAN ISAACS

Orchid Plant donated by BCAS member Francis Lau - $25.00

Won by BCAS member JANET

Gift Card – The Bay

Donated by Santhera Pharmaceuticals – value $50

Won by BCAS member CHRISTINE NG

Fujifilm Digital Camera

Donated by BCAS members Shannon & Jim Connors - value $70

Won by BCAS member GARY DAHL

‘Nomad’ Travel Deluxe Golf Bag with Wheels

Donated by BCAS member Gary Dahl - Value $125

Won by BEN (PUB PATRON)

CONGRATS TO ALL WINNERS!!!!!!!!!

A special THANK YOU to Brenda and Jenny for their help in selling 50/50 and raffle tickets and to Tara for helping with the raffle draws.

Of course a big thank you to Sue and Kent for all their help and to everyone who donated raffle items and/or sold tickets.

Ron Bartek - FARA

BCAS — Thu, 06 Oct 2011 17:21:00 +0000

As many of you know,. Ron Bartek is the Founder and President of FARA - Friedreich's Ataxia Research Alliance. Below is an explanation/comment that he made about ViroPharma's recent affiliation with FA.

Dear friends,

Just wanted to add one additional perspective to our FA family's consideration of the recent announcement by ViroPharma and Intellect Neurosciences. We had been waiting for these press releases for some time and see the announcement as great news for several good reasons. This brings two new pharmaceutical partners into our effort to treat and cure FA. Intellect Neurosciences has been working for quite a while to develop drugs for Alzheimer's disease and, after doing much of the preclinical work on OX1 and getting it through a phase I trial in healthy volunteers, identified FA as an excellent target for the drug. I believe they chose FA because: OX1 is an antioxidant and they knew FA cells suffer considerable oxidative stress; 2)OX1 seems capable of chelating iron and they knew that, in FA cells, iron accumulates in mitochondria at toxic levels and contributes to oxidative stress; 3) they saw that FA research has really matured and the FA community has become a leader among neuro-degenerative disorders in scientific research and the patient community's support of that research, and 4) they saw that the FA community has put in place the kind of infrastructure needed to support clinical drug development. Intellect Neurosciences has been communicating with FARA for quite some time and some of our leading FA scientists are already experimenting with OX1 so as to help give direction to subsequent development in FA. ViroPharma is a pharmaceutical company with an excellent track record and good resources to develop OX1 and they saw enough potential for OX1 as a treatment for FA (and other neuro-degenerative disorders subsequently) to license the drug for $6.5M up front with double-digit millions to be paid at various milestones if the drug continues to make progress. It's great to have such a capable company joining the FA family and putting their shoulder to the FA wheel. FARA will be meeting with ViroPharma very soon. And, FARA did not have to go out looking for these two fine new pharmaceutical partners. They found FA and FARA because of all the work all of us in the FA community have done together and all the research we have supported together. We will continue to embrace new pharmaceutical partners and new potential treatment options until we have the treatments and the cure for all FA patients. Yes, it will take a few years to develop OX1 but, in the meantime, we have more advanced potential treatment options that should be benefiting FA patients before OX1 is ready to show if it might be good enough to become part of an improved "cocktail" therapy. You know that the very promising antioxidant A0001 should begin its final phase clinical trial in FA later this year. Who knows, if A0001 were to become an approved treatment for FA, maybe OX1 would be ready in time to be tested to see if it might be an even better antioxidant for FA. You know that the iron chelator Deferiprone has completed phase II trials in FA and the drug company, ApoPharma, is exploring prospects for a final phase trial in FA. Who knows, maybe OX1 will be later tested to see if it might have better iron-chelation properties for FA than Deferiprone. What we do know is that we have several very promising drugs in late stages of clinical testing and several more to begin clinical testing in the very near term. We also know we will continue to bring new potential treatments into FARA's treatment pipeline and embrace promising new pharmaceutical partners until all FA patients have effective treatments and we are able to eliminate FA in subsequent generations.

Warm regards,

Ron Ronald J. Bartek

President Friedreich's Ataxia Research Alliance (FARA)