ALS Soci­ety of Quebec’s Newslet­ter, Decem­ber 2019


The ALS Soci­ety of Quebec’s monthly newsletter

Clin­i­cal tri­als recruit­ing now!

A phase 3 clin­i­cal trial

The VALOR clin­i­cal trial

(Clin​i​cal​Tri​als​.gov Iden­ti­fier: NCT02623699), is actively recruit­ing patients with a con­firmed SOD1 muta­tion, or sus­pected fam­ily his­tory of ALS. The trial has a full travel pro­gram in place, cov­er­ing flights, hotels, and ground trans­porta­tion for patients within less than 6 hours of fly­ing time from a trial site. Accel­er­ated genetic test­ing for the SOD1 gene is avail­able through the clin­i­cal trial, with genetic coun­selling sup­port pro­vided. We are encour­ag­ing all patients with either con­firmed SOD1 muta­tions, or a sus­pected fam­ily his­tory, to reach out to obtain more infor­ma­tion. Fam­ily mem­bers of patients known to have had an SOD1 muta­tion are also very wel­come to con­tact the sites to obtain more infor­ma­tion about the trial.

Two sites are in Canada – Mon­treal Neu­ro­log­i­cal Hos­pi­tal with Dr Angela Genge) and Sun­ny­brook Hos­pi­tal — Toronto with Dr Lorne Zinman.

Con­tact: Kris­tiana Salmon at This email address is being pro­tected from spam­bots. You need JavaScript enabled to view it. or 5143981779

A phase 1 clin­i­cal trial

Bio­gen 245AS101

(Clin​i​cal​Tri​als​.gov Iden­ti­fier: NCT03626012), is recruit­ing patients with a con­firmed C9orf72 repeat expan­sion, or have a sus­pected fam­ily his­tory of ALS and/​or demen­tia. This trial has a full travel pro­gram in place, cov­er­ing flights, hotels, and ground trans­porta­tion for patients within less than 6 hours of fly­ing time from a trial site. Accel­er­ated genetic test­ing for the C9orf72 repeat expan­sion is avail­able through the clin­i­cal trial, with genetic coun­selling sup­port pro­vided. We are encour­ag­ing all patients with either a con­firmed C9orf72 repeat expan­sion, or a sus­pected fam­ily his­tory, to reach out to obtain more infor­ma­tion. This is a Phase 1 trial that recruits patients in small groups, there­fore, recruit­ment is not always open and as such we encour­age those inter­ested to reach out early. There are mul­ti­ple sites are in Canada — Mon­treal Neu­ro­log­i­cal Hos­pi­tal with Dr. Angela Genge, CHUM

Mon­treal with Dr. Genevieve Matte, Sun­ny­brook Hos­pi­tal — Toronto with Dr Lorne Zin­man, Lon­don Health Sci­ences Cen­ter with Dr. Chris­ten Shoe­smith, Uni­ver­sity of Alberta with Dr. Wendy John­ston, and Uni­ver­sity of Cal­gary with Dr. Lawrence Korngut.

Con­tact: Kris­tiana Salmon at This email address is being pro­tected from spam­bots. You need JavaScript enabled to view it. or 5143981779

A phase 1 clin­i­cal trial

AL-​S Pharma AP101

(Clin​i​cal​Tri​als​.gov Iden­ti­fier: NCT03981536), is recruit­ing patients with famil­ial ALS, with con­firmed SOD1 muta­tion, or spo­radic ALS. This is a Phase 1 trial that recruits patients in small groups, there­fore, recruit­ment is not always open and as such we encour­age those inter­ested to reach out early. There are mul­ti­ple sites are in Canada — Mon­treal Neu­ro­log­i­cal Hos­pi­tal with Dr. Angela Genge, Sun­ny­brook Hos­pi­tal — Toronto with Dr Lorne Zin­man, and Lon­don Health Sci­ences Cen­ter with Dr. Chris­ten Shoesmith.

Con­tact :Juli­ette Foucher at This email address is being pro­tected from spam­bots. You need JavaScript enabled to view it. or 5143981902


Save the date:

Annual gen­eral meet­ing on Feb­ru­ary 11th

Ms. Susan Ken­nerknecht, Pres­i­dent of the Board of direc­tors of the ALS Soci­ety of Que­bec invites all mem­bers to the Society’s Annual Gen­eral Meet­ing. Researchers will be present, and a wine & cheese cock­tail will fol­low the presentations.

Time:

5:00pm to 6:00pm = pre­sen­ta­tion and 6:30pm to 8:30pm = Pre­sen­ta­tion on research includ­ing Q&A.

Loca­tion:

Ruby Foo’s Hotel (7655 Décarie Blvd, Mon­tréal, QC H4P 2H2 ) SIN­GAPOUR ROOM

Reg­is­tra­tion:

Michel at This email address is being pro­tected from spam­bots. You need JavaScript enabled to view it. or 514 7252653,
p. 105

Learn more [+]

Jan­u­ary 6 : Mon­treal – For care­givers only

Time :

6pm to 8pm

Loca­tion :

Nova West Island, 447, Bea­cons­field Blvd., in Bea­cons­field H9W 4C2

Reg­is­tra­tion :

Leslie Mitchell at 514 6958335, ext. : 205 or by email at This email address is being pro­tected from spam­bots. You need JavaScript enabled to view it.

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Jan­u­ary 9 : Lor­raine – For peo­ple with ALS and caregivers

Time :

10am to 12 :30pm

Loca­tion :

Cen­tre cul­turel Lau­rent G. Bel­ley — 4, de Mont­béliard, Lor­raine J6Z 4L1

Reg­is­tra­tion :

Eliz­a­beth at 514 7252653, ext. 103 or by email at This email address is being pro­tected from spam­bots. You need JavaScript enabled to view it.

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Jan­u­ary 15 : Mon­treal — For peo­ple with ALS and caregivers

Time :

6 :30pm to 8 :30pm

Loca­tion :

The ALS Soci­ety Office, 5415 Paré Street, Suite 200, Mont-​Royal H4P 1P7

Reg­is­tra­tion :

Eliz­a­beth at 514 7252653, ext. 103 or by email at This email address is being pro­tected from spam­bots. You need JavaScript enabled to view it.

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Jan­u­ary 20 : Que­bec city - For peo­ple with ALS and caregivers

Time :

1:30pm to 3:30pm

* You are wel­come to arrive as of 1:15pm so you can set­tle in com­fort­ably before the start of the sup­port group at 1:30pm

Loca­tion :

Noël-​Brûlart Com­mu­nity Cen­tre, 1229 Chanoine-​Morel, Québec G1S 4B1

Rooms :107 for care­givers and 104 for ALS patients

Reg­is­tra­tion :

Odette Lacroix at 418 6268726 /​418 6558726 or by email at This email address is being pro­tected from spam­bots. You need JavaScript enabled to view it.

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Jan­u­ary 21st : St-​Hubert — For peo­ple with ALS and caregivers

Facil­i­ta­tors :

Thérèse Carig­nan and Angèle Doucet

Time :

1:30pm to 3:30pm

Loca­tion :

Habi­ta­tion du Vieux Moulin. 521 Notre-​Dame east. Secteur Cap-​de la Madeleine, Trois-​Rivières

Reg­is­tra­tion :

Thérèse Carig­nan at 819 6991551 or by email at This email address is being pro­tected from spam­bots. You need JavaScript enabled to view it.

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Jan­u­ary 10 : webi­nar – clin­i­cal tri­als 101

This pre­sen­ta­tion will cover the basics of clin­i­cal tri­als, includ­ing a review of the dif­fer­ent phases, chal­lenges in con­duct­ing clin­i­cal tri­als for ALS, fre­quently asked ques­tions about ALS drug tri­als, ques­tions to ask if you’re inter­ested in par­tic­i­pat­ing in research, and what it is like to be a part of a clin­i­cal trial.

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Jan­u­ary 28 and Feb­ru­ary 4 – Inter­ac­tive con­fer­ence on cop­ing with cumu­la­tive loss – ambigu­ous loss : a first step (step 1)

Con­fer­ence ani­mated by Clara C. Verhas-​Breyne, a care­giver, actor and mosaic artist by train­ing. This con­fer­ence will cover the fol­low­ing themes: 1– The jour­ney of dis­cov­er­ing the word ‘loss’ and how it can illu­mi­nate the path; 2– Some notions to bet­ter under­stand loss, with exam­ples; 3– Effec­tive tools to con­tinue mov­ing for­ward; 4– How such a demand­ing path can also be a bright one.

Your atten­dance is required for both inter­ac­tive con­fer­ences. Con­fer­ence is in French. Trans­la­tion is available.

Learn more [+]


Fundrais­ing activ­i­ties orga­nized by the ALS community

It is thanks to fundrais­ing ini­ati­ives orga­nized within our com­mu­nity that we can pro­vide per­son­al­ized ser­vices to fam­i­lies touched by ALS across the province. Gather your fam­ily and friends and sup­port fundrais­ing activ­i­ties in your region! To cre­ate your own fundrais­ing event, please click here.

ALS Soci­ety of Quebec’s events

Infor­ma­tion: For more infor­ma­tion about all of our fundrais­ing events, please con­tact us at at 514 7252653, ext. 105 or by email at This email address is being pro­tected from spam­bots. You need JavaScript enabled to view it..

Ride to Fight ALS pow­ered by TELUS Health:
Reg­is­tra­tion is open!

August 28 to 30

Saint-​Hyacinthe

From August 28th to the 30th, join us for the 13th edi­tion of the Ride to Fight ALS pow­ered by TELUS Health! This year, the event will take place at the Sher­a­ton Saint-​Hyacinthe Hotel, in the Mon­térégie region. More than 250 cyclists and vol­un­teers will come together to par­tic­i­pate in this unique cycling event!

Learn more [+]

ALS Soci­ety of Que­bec
This email address is being pro­tected from spam­bots. You need JavaScript enabled to view it.
|sla​-que​bec​.ca
5415, rue Paré, bureau 200, Mont-​Royal, Québec, H4P 1P7, Canada
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The McGill Uni­ver­sity Health Cen­tre is not affil­i­ated with the ALS Soci­ety of Que­bec; shared for infor­ma­tion pur­poses only.

Last Updated: Fri­day, 20 Decem­ber 2019 19:09