Walk to End ALSNL – June 2024 (Various Dates)

Join the Walk to End ALS 2024 – June (Various Dates)

We know you understand what it means to be part of a resilient, brave and adaptable community and we’re excited to announce that this year we’re coming together to show our support for the Walk to End ALS!

For specific dates and details for all walks and to register today click here: https://walktoendals.ca/participate-or-donate/newfoundland/

We can’t thank you enough for your continued support.
Your Walk to End ALS support team

Walk to End ALS NL – June 12-26, 2022

Join the Walk to End ALS 2022 – June 12-26

We know you understand what it means to be part of a resilient, brave and adaptable community and we’re excited to announce that this year we’re coming together to show our support for the Walk to End ALS!

For specific dates and details for all walks and to register today click here:  https://walktoendals.ca/participate-or-donate/newfoundland/

We can’t thank you enough for your continued support.
Your Walk to End ALS support team

Virtual Support for the Walk to End ALS | June 21, 2020

We know you understand what it means to be part of a resilient, brave and adaptable community and we’re excited to announce that this year, we’re coming together virtually to show our support for the Walk to End ALS! We’re turning the Walk events across the province into an online experience in light of the evolving situation with coronavirus (COVID-19) and physical distancing measures being taken to stop its spread.

ALS doesn’t stop and neither will we. We invite you to join us online along with our national and international ALS communities on Global ALS Awareness Day: Sunday, June 21, 2020!

Register today https://walktoendals.ca/participate-or-donate/newfoundland/
Although we can’t walk together, we are all in this together and your support is needed now more than ever for the same Walk you know and love. What you can do:

1. Join your virtual community by registering yourself or your team today https://walktoendals.ca/participate-or-donate/newfoundland/
2. Fundraise safely online for community-based support and research
3. Share your progress on social. Don’t forget to tag us @alscanada and continue using hashtags #WalktoEndALS #ALSDoesntStop #communityisntcancelled

Stay tuned for more information about what event day will look like this year as well as ideas to keep you connected while physical distancing and isolation measures are in place.
Register today https://walktoendals.ca/participate-or-donate/newfoundland/ and join your virtual community in supporting the Walk to End ALS.

We can’t thank you enough for your continued support.
Your Walk to End ALS support team

 

COVID-19 Update | March 22, 2020

In light of the current COVID-19 situation and for the safety of those with ALS and the public at large, we would like to remind you that all our support group activities have been suspended across the province until further notice. However, we would like to reitirate that our Equipment Loan Program and support lines will continue. During this period, please rest assured that our organization continues with its mission to provide personalized support to our clients and their families touched by ALS. If you have questions please do not hesitate to contact us at 709-634-9499 / 1-888-364-9499 or by email cheryl@alsnl.ca

Thank you for your understanding. We will keep you updated on any new developments.

The ALS Society of Newfoundland & Labrador

ALS Canada Clinical Trial Availability Update | Dec 3, 2019

There are currently 3 trials recruiting in Canada that are particularly important for patients with familial forms of ALS. Please pass the following information on to anyone who has developed ALS and think there is a family history or a documented gene mutation that is believed to have caused their ALS:

  1. A Phase 3 trial -The VALOR clinical trial (ClinicalTrials.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, contact Kristiana Salmon (mailto:krsitiana.salmon@mcgill.ca 514-398-1779), and Sunnybrook Hospital – Toronto with Dr Lorne Zinman.
  2. A Phase 1 trial – Biogen 245AS101 (ClinicalTrials.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 exapansion, 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, contact Kristiana Salmon kristiana.salmon@mcgill.ca 514-398-1779), 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.
  3. A Phase 1 trial – AL-S Pharma AP101 (ClinicalTrials.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, contact Juliette Foucher (juliette.foucher@mcgill.ca 514-398-1902), Sunnybrook Hospital – Toronto with Dr Lorne Zinman, and London Health Sciences Center with Dr. Christen Shoesmith.

Giving Tuesday – December 3, 2019

GivingTuesday is a global movement for giving and volunteering, taking place each year after Black Friday. The “Opening day of the giving season,” it’s a time when charities, companies and individuals join together and rally for favourite causes. In the same way that retailers take part in Black Friday, the giving community comes together for GivingTuesday.

Please consider donating to the ALS Society of Newfoundland and Labrador to help support programs that provide comfort to clients and their families in a time of need.  Money also goes towards research to help find a cure.  Donations can be made online quickly and easily by clicking here >
Thank you in advance.

Donate Your Recyclables at Green Depots | Oct, 2019

Green recycling depots allow consumers to protect the environment, while generating extra pocket change.  Scotia Recycling has six green recycling depots conveniently located across Newfoundland and Labrador where customers are able to recycle their used beverage containers, and receive a refund for doing so.

You can help support ALS NL programs and clients by dropping your recyclables and donating in name of the ALS Society NL.  Check with staff at your local depots.  More details can be found on their website >>

 

Donation From Scottish Heritage Society | Sept, 2019

On Tuesday, September 17, 2019 the Scottish Heritage Society of Corner Brook presented the ALS Society of N.L. with a cheque for $500.00. This was made possible through proceeds from a dinner held by the Scottish group in early May.  On hand for the presentation, back L – R  Dale Cole, Judy Scott, Malcolm Turner of the Scottish group. Front, Doris Butt, Scottish group, Cheryl Power, ALS NL representative, and Shirley Power, Scottish group.

~Thank you from the ALS NL Staff, Board and Clients