For news and information about ALS Research, awareness programs, fundraising events and information related to ALS we encourage you to visit the ALS Society of Canada website at: www.als.ca
RECENT NEWS
(ongoing)
DONATE NOW!
It is easier than ever to donate to the ALS Society. Text CURE or ALS to 45678 - right now- to make a $5 donation to the ALS Society.
Your support offers HOPE to someone living with ALS.
(August 2010)
IN THE MEDIA
On August 17, both the New York Times and the Toronto Star featured an article suggesting that Lou Gehrig may not have had Lou Gehrig’s disease (ALS). The article were written in response to a study published in the online Journal of Neuropathology and Experimental Neurology which suggested that the clustering of TDP-43, that has been identified to be involved in ALS and frontotemporal lobar degeneration, is involved in the head injury as well.
Attached is an article written by ALS Canada’s science writer Katie Moisse, PhD, reviewing the study. Please take some time to review the article.
Annual General Meeting - September 18, 2010
The ALS Society of New Brunswick is governed by a set of by-laws which requires that an Annual General Meeting of the Board of Directors be held each year. All members are invited to attend and participate in the Annual General Meeting.
The purpose of the Annual General Meeting is to:
Announce the annual election results
Identify and reaffirm the goals of the Society
Disseminate the annual corporate financial report
Present the President and Committee Reports
The ALS Society of New Brunswick endeavours to ensure that the greatest number of members will have the opportunity to participate in this event, and as such the meeting is held in a new location each year (on a rotating basis).
This year's Annual General Meeting will take place at:
Hampton Inn Hotel and Suites 51 Fashion Drive Saint John, NB E2J 0A7 Phone: 1-506-657-1830
The Meeting will begin with coffee and muffins served at 10:15. A light lunch to follow at noon.
A quick RSVP sent to carol@alsnb.ca (or by telephone at 506-858-0373) would be appreciated so we can ensure sufficient space and refreshments for participants.
(February 2010)
WALK FOR ALS 2010
In June 2010, five Walks for ALS will be held in New Brunswick - Bathurst, Fredericton, Miramichi and Moncton. Click here for more information!
(February 2010)
LATEST NEWSLETTER - NOW AVAILABLE
The latest ALSNB newsletter is now available! In this issue we are talking all about the Walk for ALS - happening in five New Brunswick cities in June 2010. Read all about it now! - Downlad the newsletter in either English or French. And sign up (on the right) to receive your newsletter directly via email.
(January 2010)
CAREGIVER SURVEY 2010
In January 2009, the ALS Society of New Brunswick administered a satisfaction survey to its clients living with ALS. With a 40 per cent return rate, this survey was valuable in completing our three-year strategic plan.
This time, we have developed a survey for family member(s) and/or the caregivers of ALS clients. Your responses will ensure that we are meeting the needs of both our clients, as well as family members & caregivers. Your response is appreciated prior to March 1, 2010.
The survey may be filled out and submitted online, saved & emailed to carol@alsnb.ca, or printed and mailed to PO Box 295, Moncton NB E1C 8K9. We thank you for your support and we look forward to improving our services to you.
A Randomized Clinical Trial of Lithium Carbonate with Riluzole versus Placebo with Riluzole in ALS Shows No Benefit.
In February 2008, Dr. Francesco Fornai and colleagues at the University of Pisa, Italy, reported in a pilot study that lithium carbonate at dosages of 300-450 mg daily (titrated to a plasma level of 0.4-0.8 mEq/liter) combined with riluzole showed a large positive effect in people with ALS (Fornai, F., et al., Lithium delays progression of amyotrophic lateral sclerosis. PNAS, 2008.105(6): p. 2052-2057).
To further investigate lithium carbonate as a possible treatment for ALS, a randomized, blinded, multicenter trial of lithium carbonate with riluzole versus placebo with riluzole was conducted in people with ALS in the U.S. and Canada. The study used similar dosing to the Italian study. The study was conducted by the Northeast ALS (NEALS) and Canadian ALS (CALS) Consortia and was sponsored by the National Institute of Neurological Disorders and Stroke (NINDS) of the National Institutes of Health, the ALS Association and the ALS Society of Canada. This unique collaboration between investigators and funding organizations resulted in a novel study design and expeditious execution of the trial to efficiently answer a critically important clinical question. Study leaders included Drs. Swati Aggarwal, Lorne Zinman, Jeremy Shefner and Merit Cudkowicz.
An interim analysis was conducted after enrollment of the 84th subject and presented to the NINDS Data and Safety Monitoring Board in September 2009. Based on the interim analysis the trial was stopped for futility. This study did not show the same beneficial effect of lithium carbonate on the progression of ALS as the prior pilot study conducted in Italy.
Although the results are disappointing, it was very important for the ALS community to quickly and efficiently determine if the large benefit first observed for lithium could be replicated in a well controlled trial. With the ongoing assistance and commitment of patient volunteers, researchers can now focus on other promising therapeutics for patients with ALS.
(August 2009)
ALSNB Gets Funding to Develop ‘Provincial Care Map’
In February 2009, the ALS Society of New Brunswick undertook a strategic planning session. One of the key goals arising from this was our desire to provide a 'navigation system' which helps ALS patients and their families to access the care and supports they need, and to resolve issues which may prevent them from timely access to this care.
This directly supported our client survey results, in which 40% of respondents said they had difficulting navigating NB’s health care system.
To that end, ALSNB successfully applied to ALS Canada for a Seed Grant. This funding will allow us to hire a part-time researcher who will, over the next year, develop a comprehensive ‘map’ that leads a client from their initial diagnosis, through specialists, social services, financial and spiritual counselling, equipment management, end of life planning, etc.
This project would also help us to identify disparity of available care and services in the various regions of the province, and enable us to advocate for improved coverage. Our goal is for ALSNB to be the access point for people with ALS to enter and navigate the health care system. Our goal is to develop a useful resource for you and your family.
(June 2009)
ALSNB Benevolent Fund
The objective of the ALS Society of New Brunswick (ALSNB) is to support people living with ALS, their families, and caregivers. To do this we offer all registered clients of ALSNB the opportunity for funding through our Benevolent Fund.
The benevolent fund was created for requests that do not meet requirements of the equipment funding or the Support for Champions fund. Any registered client of ALSNB can request up to $1,500.00 annually to support them in achieving a higher quality of life.
All requests will be considered on a first come, first serve basis, and is offered only as funds are available. The maximum funding available through the Benevolent Fund’s is, with few exceptions, $1,500. Benevolent Fund Guideline & Application Form
(May 2009)
Support for Champions
The devastations of Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s Disease on the family unit are well documented, as no member is immune to the perils of such a devastating illness.
Gilles LeBlanc was diagnosed with ALS at the age of 36. At the time, his sons were seven and four years of age. Gilles’ foremost wish was for both of them to enjoy a non-interrupted journey through childhood, despite his devastating illness. With the aid of his many friends and a wonderful family, his children participate in numerous sports and cultural activities while growing-up.
“The emotional scars of a sick parent are enough to bear, without having them sacrifice their very own childhood” says Gilles. As a result, he created a special fund in conjunction with the ALS Society of New Brunswick to give a helping hand to every child of families touched by this terrible illness. His family and friends vow to build upon his dream of seeing every child of ALS sufferers in Canada, flourish through childhood.
Suppport for Champions is there to help with Bursaries and After-school Activities. Check out the link on the right for more information about the program, or download an application form now.
(April/May 2009)
Access 2 Entertainment
Launched in December, 2004, the Access 2 Entertainment program seeks to help businesses provide quality customer service to customers with disabilities. Through the program, people with disabilities who require a support person carry a personal Access 2 Entertainment card with them.
The card indicates to the ticket seller that the individual does indeed require the support of an attendant. The card provides free admission (or a substantial discount) for the support person at all participating entertainment venues. The person with the disability pays the regular admission fee.
In order to obtain a card, an application form must be submitted by a person with a disability who requires the assistance of a support person. The application must be authorized by a registered health care or disability service provider. Easter Seals Canada administers the application and delivery of the card. (download pdf for more program information)
(November 2008)
ALS Society of Canada - Public Service Announcements
ALS Society of Canada recently released a new series of public service announcements, also called PSA’s. PSA’s are an important tool for the ALS Society of Canada to raise awareness about what ALS is and its devastating toll on the individual and family. They also encourage people to help – donate or volunteer – to the ALS Society. The PSA's have been produced in a 30-second and 60-second format and will be played on local and national television over the next few months. You can view the English and French versions of the public service announcement for yourself on the ALS Society of Canada website.
