ALS Que­bec — Upcom­ing July Activities

Info Express - ALS Quebec

In this newslet­ter, you will find:

- The vir­tual sup­port groups to attend in the next 2 weeks (July 1930, 2021);

- A link to reg­is­ter for the 2021 edi­tion of the Ride to Fight ALS;

- A link to take posi­tion for an expe­dited & equi­table access to ALS therapies;

- A link for the Lou Gehrig Mosaic of Hope.

Vir­tual Sup­port Groups

Vir­tual Sup­port Group for Que­bec city – For peo­ple with ALS and caregivers

This group is for peo­ple liv­ing with ALS, as well as their friends, fam­i­lies, and care­givers, who are inter­ested in what’s going on in the region of Que­bec and the sur­round­ing areas. If you wish to dis­cuss, obtain infor­ma­tion or be in the com­pany of oth­ers who know what you’re going through, please join us!

When ? Thurs­day, July 19th, from 1 :30 PM to 3 PM
Where ? On Zoom*
Reg­is­tra­tion : Please click here to reg­is­ter for this sup­port group.

Vir­tual Sup­port Group – For care­givers

This group is for care­givers, friends, and fam­ily of those liv­ing with ALS. If you wish to dis­cuss, obtain infor­ma­tion or be in the com­pany of oth­ers who know what you’re going through, please join us!

When ? Mon­day, July 22nd, from 7 PM to 8 :30 PM
Where ? On Zoom*
Reg­is­tra­tion : Please click here to reg­is­ter for this sup­port group.

*Our Zoom app user guides are avail­able here.

Sur­vey — CHSLD

The ALS Soci­ety of Que­bec has formed a com­mit­tee to improve its com­mu­nity mem­bers’ qual­ity of life liv­ing in a long-​term care cen­tre (CHSLD). In gen­eral, care and ser­vices in CHSLDs are designed for seniors with a loss of auton­omy and are not nec­es­sar­ily tai­lored to the needs of peo­ple with ALS, based on the feed­back we have received to date. Although some of our mem­bers have had good expe­ri­ences in CHSLDs, there are unfor­tu­nately also oth­ers who have not.

The Soci­ety is cur­rently con­duct­ing sur­veys of all stake­hold­ers, i.e., peo­ple liv­ing with ALS in long-​term care, their care­givers, and the health­care pro­fes­sion­als who work in the CHSLDs. The pur­pose of these sur­veys is to gather infor­ma­tion on the state of the sit­u­a­tion in order to find pos­si­ble solu­tions that will help estab­lish care and ser­vices tai­lored to the spe­cific needs of peo­ple with ALS.

Please con­tact Kate Busch at This email address is being pro­tected from spam­bots. You need JavaScript enabled to view it. or by phone at 5147252653, ext. 109 if you would like to par­tic­i­pate in the survey.

The time is now

Urgent call for expe­dited & equi­table access to ALS therapies

In Canada, the drug access path­way is drawn-​out, con­fus­ing and filled with red tape. This means that after a new ALS drug is approved by Health Canada, we still wait years before provin­cial gov­ern­ments decide if it will be pub­licly cov­ered. And that’s if a deci­sion is made at all.

With more ALS ther­a­pies in the pipeline than ever before, Cana­di­ans can­not be forced to wait years after Health Canada approval to be able to access them.

We need your help telling elected offi­cials that Cana­di­ans liv­ing with ALS must not have to wait years to be able to access ther­a­pies already approved by Health Canada.

ALS Canada’s posi­tion paper, titled The Time is Now, has been pub­lished today. This doc­u­ment offers two solu­tions to get­ting Health Canada approved ther­a­pies to Cana­di­ans liv­ing with ALS in a time­frame that more accu­rately reflects the urgent needs of this community.

If you agree with this need, go to the web­site to auto­mat­i­cally send a pre-​written let­ter to your elected offi­cials, telling them how impor­tant it is to you that they read the rec­om­men­da­tions and do some­thing about them. You can do this with just a few clicks.

Cana­di­ans liv­ing with #ALS sim­ply don’t have time to wait. The sta­tus quo is no longer accept­able. Please send your let­ter now: https://​buff​.ly/​2​U​g​X​t​a​l

Join our vir­tual events!

Lou Gehrig Mosaic of Hope

Be part of the team to be united to strike out ALS. Add your photo to the Lou Gehrig Mosaic of Hope now. Remem­ber or hon­our a loved one, share your story, show your sup­port and help spread the word in your friends and family.

Sign up today, alone or in a team, and ride when­ever and wher­ever you want, from June 1st to August 29th.

You can also join us for our one-​day event on Sat­ur­day, August 28th in Saint-​Hyacinthe area for a 75 km ride.

ALS Soci­ety of Quebec

This email address is being pro­tected from spam­bots. You need JavaScript enabled to view it. | This email address is being pro­tected from spam­bots. You need JavaScript enabled to view it.

5415, rue Paré, bureau 200, Mont-​Royal, Que­bec H4P 1P7

The McGill Uni­ver­sity Health Cen­tre is not affil­i­ated with the ALS Soci­ety of Que­bec; shared for infor­ma­tion pur­poses only.

Last Updated: Fri­day, 16 July 2021 17:18