What's New
Recent and breaking news on ALS/MND - Including research and treatments:
TORONTO, June 25, 2009- The ALS Society of Canada's television public service announcement, "Head and Shoulders", has won the 2009 Applied Arts Design & Advertising Award for best single television commercial over 30 seconds.
Created pro bono by Toronto ad agency, LOWE ROCHE, the emotional public service announcement features a man progressing through the stages of ALS. The PSA has aired across the country in both French and English and has been viewed more than 40,000 times on YouTube.
"The 'Head and Shoulders' PSA has been tremendously successful in raising awareness for ALS. It so accurately shows the devastating effects of this relatively unknown disease." says David Cameron, president and CEO of ALS Society of Canada.
The public service announcement will appear in the prestigious November Design & Advertising Awards Annual publication. It will also be displayed at the Award's Winner Exhibit and featured on the Design & Advertising Awards Winners online gallery, which attracts more than 200,000 visitors annually. The awards given by Applied Arts, a Canadian visual communications magazine, recognize exceptional design and advertising each year.
View the Head and Shoulders public service announcement at http://www.als.ca/
A gene that significantly influences the survival rate of people living with motor neuron disease (MND) by 14 months has been identified by scientists in an international research collaboration - funded in part by the MND Association of England, Wales & NI.
Led by Prof Ammar Al-Chalabi at the Medical Research Centre for Neurodegeneration Research, King’s College London, and Prof Robert Brown at the University of Massachusetts Medical School, the international research team looked at 300,000 genetic variants in 2,359 people with MND and 2,814 unaffected volunteers from six different countries.
The researchers aimed to narrow the search for genes involved in MND by identifying potential ‘hot spots’ linked to the disease which could then be carefully searched, letter by letter, for disease related ‘spelling mistakes’ in the human genetic code. Using the same methods, the researchers could also search for gene variants that alter the progression of the disease.
It is this latter approach that has thrown up an exciting result, by identifying a ‘protective’ gene that extends the life of people diagnosed with MND – the first in the history of MND research.
KIFAP3 gene – extending survival rate
Researchers have identified a genetic variation in the KIFAP3 gene which is important in determining the survival rate for people with MND.
People with two beneficial variants of KIFAP3 lived on average four years while those with only one or none lived on average for two years and eight months.
Significantly, this represents an improvement in survival of nearly 50% or over 14 months for patients with two beneficial variants. Life expectancy for most people with MND is just two to three years. However, the chances of surviving five years improved from about 10% to more than 30% for those carrying the ‘good’ variants of KIFAP3.
So far, only one drug called riluzole has been proven to have an impact on extending the life expectancy of people living with the disease. It has been shown to extend life expectancy by a few months.
What this means for MND research
Prof Al-Chalabi said: “Treatments can now be directly designed to exploit the effect of this gene variation. The more usual situation is for genetic risk factors for a disease to be identified rather than survival genes.
“Genetic risk factors are important but they have limited benefit for designing effective treatments because doctors only see people once they are already affected, so treatments need to be aimed at improving survival, not at reducing risk.”
The research also has implications for the design of MND clinical trials. It is possible that an excess of people carrying the beneficial survival gene variants in one group in a clinical trial might make it look as if a drug is effective when it is not, or vice versa.
Dr Brian Dickie, director of research development at the MND Association, explained: “This is a significant finding, bearing in mind the speed with which MND can progress in patients.
“Just as there are genetic ‘villains’ that can cause or predispose people to disease, so there are undoubtedly ‘hero’ genes that help delay the onset of disease or slow its progression.
“This is the first gene to be associated with such a marked protective effect. Undoubtedly, this research will open up potential treatment strategies for the thousands of people living with MND in the UK and throughout the world.”
The reasons why certain variants of the KIFAP3 gene can alter disease progression are still unclear. Researchers know that the gene is involved in a number of cellular processes, most notably the transport of essential molecules throughout the nerve cell. This is an area of MND research that has attracted a lot of attention, as disruption of cellular transport appears to occur in the early stages of the disease.
Prof Brown who led the research in the USA said: “This has truly been a multinational collaboration, involving 19 groups from six countries. It illustrates how effectively an international consortium in MND research can help us understand why motor neurons degenerate in this disease. The challenge now is to turn this new knowledge into effective treatments; the KIFAP3 story provides a new target for therapy development.”
Toronto, April 13, 2009: Two seemingly disparate strands – a runaway blockbuster and a clinical trial of a promising new therapeutic approach to a fatal neuromuscular disease – are being woven together in a new initiative by the ALS Society of Canada.
The first strand is a short memoir called Tuesdays with Morrie, which catapulted a little-known disease into the forefront of world attention in 1997; the success of the book has kept it there ever since. More than 11 million copies of Tuesdays with Morrie have been sold worldwide, and it spent more than four years on The New York Times best seller list. The story was adapted as a television movie in 1999 and as a play that was performed in New York City in 2002.
Most people know the story: sports columnist Mitch Albom reconnects with his former college professor, Morrie Schwartz, who is in the final stages of amyotrophic lateral sclerosis (ALS). Albom spends 14 Tuesday afternoons with his mentor, learning anew about life, laughter and love. But the clock is ticking. Albom knows that the final lesson will be about death: ALS is an unforgiving disease and there are no survivors.
Across the ocean, another strand. In 2008, a small Italian study of 44 people published the results of a 15-month trial: daily doses of the drug lithium, used to treat bipolar disorder, taken together with riluzole, significantly slowed the progression of ALS. By year’s end, the ALS Society of Canada proudly announced the launch of the first Canadian national clinical trial. The objective of the trial is to confirm the effectiveness of lithium in slowing the progression of ALS in patients in the early stages of the disease.
“Since there is no cure for ALS yet, research into treatments gives hope to ALS patients and their families,” explains David Cameron, president and CEO of ALS Canada.
This remarkable achievement was made possible as a result of ALS Canada’s leadership role in facilitating the establishment of the Canadian ALS Clinical Trials and Research Network (CALS). CALS is a consortium of ALS clinicians across the country who have incorporated to develop and deliver groundbreaking treatments and scientific discoveries that will forever change the future of Canadian ALS research. The lithium trial is the first joint effort between CALS and the Northeastern ALS Consortium (NEALS) in the United States.
One year after the publication of the Italian study, the Canadian lithium clinical trial, under the leadership of Dr. Lorne Zinman, medical director of the ALS Clinic at the Sunnybrook Health Sciences Centre in Toronto, is underway. At nearly $1,000,000, the trial is the largest ALS Canada research commitment to date. ALS Canada is able to make this investment thanks to the generous support of the Temerty Family Foundation: their gift of $250,000 is the largest solicited gift that ALS Canada has ever received.
Denise Figlewicz, PhD, director of research at ALS Canada says, “The promising results from the Italian study data served as the impetus for new research and treatment strategies. This is very exciting news for the ALS community.”
And now, these two separate strands – Tuesdays with Morrie and the lithium trial – are being woven together. To fund the trial and our other important research initiatives, ALS Canada is hosting the exclusive opening night of the stage version of Tuesdays with Morrie on Friday, May 8, at the Winter Garden Theatre in Toronto. The play is being mounted by the Harold Green Jewish Theatre Company. It will be directed by Gemini Award–winning actor/director Ted Dykstra. The role of Morrie will be played by Hal Linden, star of the 1970s police comedy Barney Miller, and Rick Roberts of Traders fame will play Mitch.
For tickets or for more information, please contact:
Laurie Pringle at 416-497-2267 ext. 219 or lp@als.ca
About ALS:
ALS, also known as Lou Gehrig’s disease, is a fatal neuromuscular disease that attacks and paralyzes the muscles, ultimately resulting in death. ALS can affect men and women from any ethnic origin at any age. Approximately 2,500–3,000 Canadians are living with the disease. And 80 per cent of those affected will die within two to five years of diagnosis. According to the World Health Organization, neurodegenerative diseases are predicted to surpass cancer as the second leading cause of death in Canada by 2040.
About the ALS Society of Canada:
The ALS Society of Canada was founded in 1977. ALS Canada is the only national voluntary organization dedicated solely to the fight against ALS and to support for those with ALS. The mission of the ALS Society of Canada is to fund research towards a cure for ALS and to support provincial Societies to provide quality care for those affected by ALS. www.als.ca
For more information:
Bobbi Greenberg
Director of Communications
ALS Society of Canada
416-497-2267 ext. 208
bg@als.ca
The MND Association has received an award for our successful Research Foundation campaign which secured multi-million pound Government funding for MND research.
The MND Association Research Foundation campaign won in the campaigning and public affairs category of the 2009 Science Communication awards, organised by the Association of Medical Research Charities (AMRC).
The awards are held every two years and are designed to celebrate AMRC members’ excellence in communicating science and to recognise and reward best practice in science communication.
The judges commended the Research Foundation’s clear objectives and direct approach, which is great praise for a campaign that involved so many people connected to the MND Association. It was a hard-fought category, which saw the Association nominated alongside Breakthrough Breast Cancer and the Prostate Cancer Research Foundation.
The Research Foundation
The MND Association set up the Research Foundation in 2006 with the aim of raising £15 million for MND research. We put together a business case and lobbied in Parliament for half of this funding to be provided by the Government. We were delighted when, in 2007, this was secured through the setting up of a funding partnership with the Medical Research Council.
Dr Kirstine Knox, chief executive of the MND Association, says: "The Research Foundation campaign was inspired by our vision of a world free of MND and by people with MND themselves, who we know from our membership survey place a high priority on research.
"I would like to pay tribute to everyone affected by MND who played a role in our campaign. Hundreds of people affected by the disease wrote to the then Prime Minister Tony Blair to press our case for funding and these letters had a tremendous impact."
What the judges said
The judges praised the Research Foundation campaign for: “a clear presentation of what’s the problem, what can be done about it, a business case for doing so wrapped up with the emotional case”.
In the words of one of the judges: “When I have £100,000 to give away, the MND Association would get it for that sort of direct approach.” The manner in which we garnered support for our campaign was also singled out for praise as well as our “sophisticated lobbying”.
Our campaign was also praised for: “a really excellent business case, focusing not just on the human rationale, but also speaking to the Government on its own terms, i.e. potential financial savings, alignment with Government’s own health research agenda, how the pharma and biotech industries would be involved, and how a partnership with the MND Association could benefit Government, not the other way round.”
ALS Canada is supporting a national clinical trial, which is aimed to confirm the effectiveness of lithium in slowing the progression of ALS in patients in the early stages of the disease. Patients may be included if they are within three years of symptom onset and not already taking lithium.
The lithium clinical trial is the first joint effort by ALS clinicians in Canada who have recently formed a consortium — the Canadian ALS Clinical Trials and Research Network (CALS) — under the leadership of Dr. Lorne Zinman, medical director of the ALS Clinic at the Sunnybrook Health Sciences Centre in Toronto. The clinical trial, funded by ALS Canada, at nearly $1,000,000, is our largest research investment to date. We were able to make this investment thanks to the generous support of the Temerty Family Foundation, which has made a lead gift of $250,000, the largest solicited gift that ALS Canada has received in its 32-year history.
CALS will be joined in the clinical trial by the Northeastern ALS Consortium (NEALS), which includes internationally renowned ALS expert neurologists from Harvard University, Columbia University and a number of other prestigious university-based ALS Centres. In addition to funding by ALS Canada, the clinical trial commencing this month in Canada and the United States is being funded by The American ALS Association and the National Institutes of Health.
In Canada, the trial will be conducted at 15 ALS clinics. It is expected to be completed after two years. The trial will be a double-blind, placebo-controlled study with up to 250 patients — 125 of whom will be in Canada. The disease course and safety assessments will be measured at regular intervals over that time.
The objective of this trial is to confirm data from a small Italian clinical study that demonstrated significant positive effect in slowing the progression of ALS in patients in the early stages of the disease, through the use of lithium.
Lithium has numerous neurological effects and is a Health Canada approved drug most commonly used as a mood-stabilizing drug in treating bipolar disorder. It is a potentially toxic drug and must be taken under doctor’s supervision with frequent monitoring of blood levels. Lithium was found to protect neurons in the brain and spinal cord in animal models of neurodegenerative diseases, including Alzheimer’s and Parkinson’s.
For a list of Canadian clinics that are enrolling people with ALS, please visit http://www.als.ca/research/lithium_trial.aspx. To register in the trial, or for more information, please contact your local ALS clinic.
Passing of ALS Canada board member – Sidney Valo
It is with regret that the ALS Society of Canada announces the passing in December 2008, of Sidney Valo, QC. Sidney Valo was a founding partner of Pallett Valo in Mississauga, Peel Region’s top law firm. He was a founding director, and later chief executive officer, of the Greater Toronto Airports Authority.
After being diagnosed with ALS in April 2005, Sidney Valo resolved to accept his condition as his “new normal” and do all he could to help others afflicted with ALS. He made a conscious decision to disclose his ALS in an effort to build awareness of this devastating disease. Sidney coupled his business and volunteer skills with his strong belief in giving back to the community, and he became a leading fundraiser.
Just over a year after his diagnosis, Sidney joined the Board of Directors of the ALS Society of Canada and established the Valo Fund for ALS Research. To date, the Valo Fund has raised more than $100,000 and is working toward a new goal of $150,000. In 2006, Sidney was the recipient of the Exceptional Fundraising Program Award from the ALS Society of Canada after he led Team Valo, comprised of friends, family and colleagues, in raising more than $29,000 at the WALK for ALS in North York, Toronto.
Sidney’s perseverance, creativity and leadership in fundraising touched the lives of his fellow Canadians, and he received many messages of encouragement and praise. In June 2008, the annual ALS Society of Canada Charity Golf Classic was held in honour of Sidney Valo. The upcoming 2009 Charity Golf Classic, to be held on June 23, will be held in his memory, for more information please visit www.golfforals.ca.
Hal Linden to star in Tuesdays with Morrie
Imagine getting a second chance. This is what happened to Mitch Albom. Sixteen years after graduating from college he reconnects with his former college professor, Morrie Schwartz, now in the last stages of ALS. Mitch spends 14 Tuesday afternoons with his former mentor and is given a rare gift – the possibility of re-evaluating his achievements and learning what is truly important in life.
Mitch shared these insights with the world in a 1997 book called Tuesdays with Morrie: An Old Man, a Young Man, and Life’s Greatest Lesson. More than 11,000,000 copies of the book have been sold worldwide, and it spent more than four years on the New York Times best seller list. The story was adapted as a television movie in 1999 and as a play that was first performed in New York City in 2002.
“I was unprepared for how moving and powerful Tuesdays with Morrie turned out to be,” commented a reviewer from the New York Post. The New York Daily News called the play “a touching, life-affirming, deeply emotional drama with a generous dose of humor.”
Theatregoers in Toronto will soon have the opportunity to learn those same life-affirming lessons when the play opens from May 8-31 at the Winter Garden Theatre. The play is being mounted by the Harold Green Jewish Theatre Co. It will be directed by Gemini Award–winning actor/director Ted Dykstra. The role of Morrie will be played by Hal Linden, star of the 1970s police comedy Barney Miller, and Rick Roberts of Traders fame will play Mitch.
ALS Canada is proud to announce that it will be sponsoring a special premiere of Tuesdays with Morrie on Friday, May 8. Tickets are available for sale by contacting Laurie Pringle at lp@als.ca at 416-497-2267 ext. 219. For more information please visit www.als.ca, or. A portion of the ticket price will qualify for a tax receipt.
Prices: Sponsorships range from $1,000 - $5,000
Patron $200 (pre-reception with artistic directors – Boxes A–V)
Platinum $150 (Section A – Orchestra Rows A–M, Balcony Rows A–D)
Gold $125 (Section B – Orchestra Rows N–U)
Silver $100 (Section C – Mezzanine Rows E–L)
Special thanks to the Valo Family, the Suma family and the Dunn family, our presenting sponsors for the evening. Additional sponsorship opportunities are also available.
New Advertising Campaign
Lowe Roche, ALS Canada’s new pro-bono advertising agency, has created an advertising campaign to increase awareness about this devastating disease.
The 30- and 60-second spots, in English and French, are called “Head and Shoulders.” Lowe Roche has also created a series of three print ads which complement the PSA campaign.
Lowe Roche, a boutique agency established in 1991, was the winner of Marketing’s 2007 Agency of the Year award. Recently, they won 13 Digital Marketing Awards—more than any other agency. They have a prestigious roster of clients including the Toronto Zoo, Stella Artois, Audi, Johnson & Johnson, Nokia and Boston Pizza.
The spots have aired on national and local networks from British Columbia to Newfoundland, and have received national media coverage from The Globe and Mail, the National Post, Marketing Magazine, as well as a plethora of advertising publications. The PSAs are posted on advertising blogs around the world from Berlin and Brazil to Poland. To view the spots, please visit http://www.als.ca/default.aspx
Major League Baseball will raise awareness and financial support for organizations leading the fight against ALS (Amyotrophic Lateral Sclerosis), otherwise known as "Lou Gehrig's Disease," with a new charitable campaign, "4♦ALS Awareness," Baseball Commissioner Allan H. (Bud) Selig announced today.
MLB is working with four leading organizations -- The ALS Association, ALS TDI, Augie's Quest (the Muscular Dystrophy Association's ALS research initiative) and Project A.L.S. -- whose primary goal is to find a cure for ALS. The initiative will culminate on July 4, 2009, which is the 70th anniversary of Lou Gehrig's famous farewell speech at Yankee Stadium. ALS destroys the nerve cells controlling muscles, ultimately causing complete paralysis. Average life expectancy is three to five years after diagnosis.
"We are honored and pleased to have the opportunity to join these four important organizations in an attempt to make progress in the fight against ALS, a disease that is associated with one of the greatest players in baseball history," said Selig. "Lou Gehrig displayed tremendous courage and strength in the face of a debilitating illness, and his speech 70 years ago still stands as one of the defining moments in baseball history."
Following is an excerpt from Gehrig's famous speech: "For the past two weeks you have been reading about a bad break I got. Yet today I consider myself the luckiest man on the face of the earth. I have been in ballparks for seventeen years and have never received anything but kindness and encouragement from you fans."
On July 4, 2009, each home team will host an on-field reading of Gehrig's Farewell speech during the 7th Inning Stretch. All players will wear a "4♦ALS" patch on their chest and MLB will promote the effort in a variety of ways, including in-stadium promotions. In addition, MLB.com will conduct an online auction to raise funds for the cause, and Major League Baseball will continue to work with the four organizations to identify additional opportunities to raise funds and awareness.
The ALS Association is a non-profit organization fighting Lou Gehrig's Disease on every front. Through global research, providing assistance for people with ALS via a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.
"The ALS Association is proud to partner with Major League Baseball and our ALS organization team members in this historic initiative to raise awareness and resources in the fight against ALS," said Allen L. Finkelstein, chair of The ALS Association National Board of Trustees. "The '4♦ALS Awareness' campaign provides renewed hope that Lou Gehrig's greatest accomplishment will not be measured by statistics, but by the lives saved in his name."
The ALS Therapy Development Institute (ALS TDI) has a single mission -- to develop therapeutics that slow and stop ALS. With close to a $12 million annual budget, the nonprofit Institute has a 30 person research team working aggressively in its research center. ALS TDI is fulfilling its urgent mission by applying the best practices of a biotechnology company on behalf of today's patients.
"ALS is a crisis. It is an unmet medical need. It has been labeled an incurable disease, but with the technology and expertise available now we believe this problem can and will be solved. This is exactly what is happening in our lab today. We are grateful to be part of this initiative and encourage everyone to get involved in the '4♦ALS Awareness' campaign," said Sean Scott, president of ALS TDI.
Augie's Quest, the Muscular Dystrophy Association's ALS research initiative, is an aggressive, cure-driven effort singularly focused on finding treatments and cures for amyotrophic lateral sclerosis (ALS). MDA funds over $23 million annually and has funded more than $250 million since its inception.
"Major League Baseball is making a huge difference in the fight against Lou Gehrig's disease through this July 4 effort," said Augie Nieto, founder and chief inspiration officer for MDA's Augie's Quest. "Both in terms of public awareness and fundraising, the MLB contribution is significant and has a profound impact on the lives of people living with this devastating disease."
The mission of Project A.L.S. is to create a new paradigm for neurodegenerative disease research. They identity the world's leading researchers and clinicians and mobilize them to work together as teams in the areas of Genetics, Drug Discovery, Stem Cells, and Disease Pathways. Each project they fund is vetted and approved by its research advisory board. Project A.L.S. has raised over $38 million to fund these efforts.
"Project A.L.S. is thrilled to partner with Major League Baseball and the ALS Community to forward research that will result in effective treatments and a cure. This is Lou Gehrig's legacy," said Valerie Estess, founder and director of research of Project A.L.S.
Craig Stockton, CEO of MND Scotland says, “The new name and logo reflect the organisation’s values by putting those affected by Motor Neurone Disease (MND) in Scotland first. The logo contains a blue ‘Cornflower’ icon that is easily recognisable and was chosen as it signifies hope for the future. The Cornflower is a hardy, wild flower native to Scotland and countries where it survives in the most challenging environments. The Cornflower reflects the resilience of people affected by MND - they face up to all that life throws at them, in much the same way that the cornflower resists all that nature throws at it.”
On 20th of January 2009, a special event for supporters of 'MND Scotland' was attended by Princess Anne, and MSPs at Stirling Castle to launch ‘MND Scotland’ as the only charity in Scotland providing care, information and funding for research to benefit the MND community. It is the first step in giving the charity a more modern, up to date identity. The Board of Directors agreed that the time is right for change, following years of feedback from much of the MND community, consistent misnomers in the press and the sheer tongue twisting effort to pronounce our previous name.
With the new name comes a new logo created by "The Graphics Company." A well respected, professional design firm who have worked with various charities including Down’s Syndrome Scotland, Edinburgh Zoo and the Scottish Council for Voluntary Organisations (SCVO) which is the umbrella body for voluntary organisations in Scotland. The Graphics Company have employed the ‘Cornflower’ icon, used to promote our flagship fundraising "Cornflower Ball" in recent years. The cornflower was chosen because it is the internationally recognised symbol of hope for MND organisations and people affected by the illness throughout the world.
The new logo represents the future of the Association. We felt it was important to reflect upon the past and get the opinion of Peggy MacLeod who was involved at the beginning, with her late husband John the founder of the charity in 1981. Peggy has witnessed the Association branded in 3 previous styles. She said, “The new name conveys a message that we are an independent Scottish charity and the logo is very eye catching.” Peggy remembers the lack of support and knowledge about MND in the days when John was first diagnosed with MND. Peggy said, “John would be delighted that the Association has come such a long way from such a small beginning. He was determined that more information about the illness would be available for the MND community. He also had a passion to improve the level of professional support”.
The Association now aims to use ‘MND Scotland’ to spread awareness worldwide through the media and sister organisations, to represent people like John and all others affected by MND in Scotland.
The Scientific Advisory Board is comprised of: Wim Robberecht (Leuven University, Belgium)(Chairman) Caterina Bendotti (Mario Negri Institute, Milano, Italy) Leonard H van den Berg (Utrecht University, The Netherland)Linda Greensmith (University College London, UK) Albert Ludolph (Ulm University, Germany)Vincent Meininger (Salpétrière Hospital, Paris, France) |
Created by Lowe Roche on a pro bono basis, the 60-second television public service announcement, “Head and Shoulders” is composed of a montage of clips, each one focusing on a man with ALS in emotionally charged moments as his disease advances to different parts of his body. Set to the children’s song, “Head and Shoulders, Knees and Toes”, as the spot progresses, and his conditions worsen, the cheerful singing becomes a sad whisper. “We chose to create a spot that was musically and emotionally driven to raise awareness for ALS,” said Christina Yu, Vice President, Creative Director, Lowe Roche. “This song is one which everybody can relate to and we wanted to use it unconventionally to illustrate how this disease eventually affects every body part.”ALS, also known as Lou Gehrig’s disease, is a rapidly progressive and fatal neuromuscular disease that causes the degeneration of nerve cells in the brain and spinal cord. As the nerve cells die, people with ALS lose control of their muscles, which makes breathing, eating and even smiling almost impossible. Eighty per cent of those diagnosed will die within two to five years. There is no known cure or effective treatment of ALS. "Lowe Roche has created a very powerful commercial that we think will help the public better understand what ALS is all about," explains Bobbi Greenberg, Director of Communications, ALS Society of Canada. "We're very appreciative of their dedication to this project and of those who donated their time and services during the production process. We’re certain that their efforts will help us raise the funds we desperately need to proceed with research initiatives that will ultimately help us find effective therapies and a cure for this devastating disease."View “Head and Shoulders” online here http://www.glossyinc.com/loweroche/als.htmlor on YouTube here http://www.youtube.com/watch?v=g0Q4kIx95aUFull creative credits are posted here http://www.glossyinc.com/alscred.html. People wishing to donate to the ALS Society of Canada can do so at http://www.als.ca. About Lowe RocheLowe Roche is a Toronto-based communications company that specializes in developing innovative 360˚ multimedia campaigns. It is part of Lowe Worldwide, headquartered in London. Founded in 1991 by Geoffrey Roche, the agency has been named Agency of the Year six times including 1997, Agency of the Decade and International Agency of the Year by Advertising Age. It was the top-performing agency at the Digital Marketing Awards held in 2007, with thirteen wins adding to the over 1,000 awards won by the agency in the last 16 years. Clients of Lowe Roche include: Audi Canada, Johnson & Johnson, Mackenzie Financial, Nestle Purina, Coca-Cola, Bauer, Toronto Zoo, and most recently Miele Canada. About the ALS Society of CanadaFounded in 1977 as a national voluntary health organization, the ALS Society of Canada funds research towards a cure for ALS and supports our provincial partners in the provision of quality care for those living with ALS. Additional information about the ALS Society of Canada is available at www.als.ca.
2008 Thérèse Casgrain Volunteer Award -
About the Thérèse Casgrain Volunteer Award
Thérèse Casgrain, a native of Montréal, was the force behind various social reforms promoting justice and equality. She was involved in provincial, national and international organizations and was one of the pioneers of the women’s rights movement in Canada. The Award, originally established in 1982, was re-launched in 2001, the International Year of the Volunteer, in her honour to recognize and celebrate the achievements of dedicated volunteers. The Thérèse Casgrain Volunteer Award is presented annually to two Canadians, one man and one woman, who have contributed significantly to the advancement of a social cause and the well-being of their fellow Canadians. The award consists of:- a bronze medallion bearing the likeness of Thérèse Casgrain;
- a lapel pin and a certificate of recognition; and
- $5,000 to be awarded to a registered Canadian charity designated by the recipient.
Toronto, ON — April 2, 2008: When a parent is diagnosed with ALS everything changes not only for him or her, but also for the family. It can be hard for a parent to discuss this fatal disease with their children in a manner that they can understand. In turn, those children may experience thoughts and feelings that they are unable to comprehend and deal with. Jane McCarthy, director of services and education at the ALS Society of Canada, has created an award-winning series of informational booklets as part of the als411 program.
“Living with a parent with ALS, a child can feel there is nowhere to turn because the other parent is too busy being the caregiver, and s/he may be too uncomfortable to talk to their friends at school because they perceive that they will not understand. This leaves the child alone to cope with feelings s/he may not know how to manage. These information booklets will help provide children and their parents with tools to help process the news of the ALS diagnosis and cope with the changes along the way,” explains McCarthy
The goal of the als411 program is to target children and teens whose parents are battling ALS, to help answer any questions or concerns they may have about their loved one’s condition as well as to help both them and their parents learn to cope with the feelings associated with this devastating illness. The informational series is comprised of three booklets targeting parents, teens and children. Each one is tailored to address their individual concerns to provide them with coping mechanisms and suggestions on how to approach their upcoming challenges.
The booklet for teens entitled, “When Your Parent Has ALS,” was developed with the input of eight teenagers who have gone through the painful experience of losing a parent to ALS and shares their experiences and feelings in hopes that other teens can take comfort in knowing that they are not alone, and the feelings they may be having are normal. All the booklets are available in print as well as an online version available on the als411 web site (http://www.als.ca/als411/), in both English and French. Stayed tuned for the new and improved als411 web site coming this summer, which is being re-launched as two sites, one for children and one for teens. Both sites will be bilingual as well as incorporate more interactive features.
Two of the booklets received Mercury Excellence awards. The booklet for teens received the silver award in the category of Special Purposes Brochures, and the booklet for children entitled, “When Someone Special Has ALS,” was awarded bronze for Brochure Design. The Mercury Excellence Awards are sponsored by MerComm’s award program, which recognizes outstanding achievements in the field of communications in an international arena.
ALS, more commonly known as Lou Gehrig’s disease, is the most common type of neuromuscular disease that attacks and paralyzes the muscles, ultimately resulting in death. ALS does not discriminate and can affect men and women of any ethnic origin at any age. Approximately 2,500 - 3,000 Canadians are battling this disease. Eighty per cent of those affected will die within two to five years of diagnosis.
Founded in 1977, the Amyotrophic Lateral Sclerosis (ALS) Society of Canada is the only national voluntary organization dedicated to the fight against ALS and support for those with ALS. The mission of the ALS Society of Canada is to fund research towards a cure for ALS and support provincial Societies to provide quality care for those affected by ALS.
The WFN Research Group facilitates collaboration across borders defined by both geography and discipline. The ALS Journal is the only dedicated publication for this rapidly progressive neurodegenerative disease, and subscription is available as a benefit to members of the WFN Research Group on ALS/MND.
"Working together as a community of clinicians, scientists and care providers, we must continue to strive to make a difference in the lives of people with ALS. As the incoming editor I, with the new editorial board, will do my best to attract and publish research that will help to make that difference a reality" said Orla Hardiman, incoming editor.
To find out more about the ALS Journal, and to become a subscriber, click on http://www.informaworld.com/als.
To find out more about the World Federation of Neurology Research Group on ALS/MND, click on http://www.wfnals.org/
Dr. Stanley H. Appel, Chairman of the Department of Neurology at The Methodist Hospital and one of the nation's foremost experts on Lou Gehrig's disease, will receive the 2008 John P. McGovern Compleat Physician Award on Jan. 25. This national award, given by the Houston Academy of Medicine, recognizes a physician who embodies exemplary service to humanity and whose career reflects medical excellence, humane and ethical care, and commitment to the medical humanities.
Appel, co-founder and co-director of the Methodist Neurological Institute (NI), Medical Director of the MDA/ALS Research and Clinical Center at the Methodist NI, and Professor of Neurology with Weill Cornell Medical College, has spent more than 40 years devoted to understanding the human brain. Internationally renowned as a researcher and neurologist, Appel is dedicated to the treatment of patients with amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease, and committed to neurological research in other neurodegenerative diseases as well. Over the course of his career, he has treated more than 3,000 ALS patients, more than any other physician in the U.S. In 1982, Appel created what is now the Methodist Neurological Institute's MDA/ALS Research and Clinical Center in Houston, the first multi-disciplinary clinic in the U.S. dedicated to care and research for ALS patients. Methodist's Clinic is the standard by which all other MDA/ALS clinics are modeled. Appel holds the Peggy and Gary Edwards Distinguished Endowed Chair for the Treatment and Research of ALS.
"Dr. Appel is an amazing clinician and researcher and an exemplary model of compassionate care and dedication to humankind. We congratulate him on such a well-deserved honor," said Ron Girotto, President and CEO of The Methodist Hospital System.
For decades, Appel's research has focused on developing new insights into degenerative neurological diseases, including Alzheimer's, Parkinson's, and, primarily, ALS. His greatest legacy, though, may be the more than 200 neurologists he has trained, many of whom have gone on to chair their own departments across the nation and in Europe and in Asia.
The John P. McGovern Compleat Physician Award, established in 1993, is presented annually by the Houston Academy of Medicine to recognize a multi-accomplished physician who has enriched the field of medicine by being a compassionate clinician and devoted teacher, who has a strong familiarity with research, and has demonstrated a commitment to and love of the profession of medicine. The award is named after its first recipient, Dr. John P. McGovern, who founded the American Osler Society.
Appel will receive the award during the Annual Installation of Officers banquet of the Houston Academy of Medicine and the Harris County Medical Society. He will join the ranks of past Compleat Physician Award recipients, including famed Houston heart surgeons Dr. Michael E. DeBakey and Dr. Denton A. Cooley, as well as other nationally-renowned physicians, such as Dr. Ralph D. Feigin, pediatric infectious disease specialist and Chief of Pediatrics at Texas Children's Hospital, Dr. Victor McKusick, University Professor of Medical Genetics at The Johns Hopkins University, and Dr. W. Walter Menninger, a distinguished psychiatrist and past President and CEO of The Menninger Foundation.
“Needs and Offers” (N&O) is a mechanism by which members of the Alliance can register their needs and other members can communicate their offers to address that need.
The aim is to link members with needs to those who may have a means to address those needs.
Elizabeth Grandbois, an ALS/MND advocate living with the disease, will be inducted into the Terry Fox Hall of Fame in recognition of her efforts to increase public awareness and improve quality of life for others afflicted by ALS.
It is a progressive degenerative disease of the nervous system.
I have had it for 40 years.
I cannot walk or talk,
But I can write books, travel the world, and even float in zero gravity.
Most ALS patients don’t survive for 5 years,
But a few, like me, live longer.
The Motor Neurone Disease (MND) Association of England, Wales and Northern Ireland has received its largest ever donation pledge.
2008 ALS Clinical Management Conference
Hope for Today, a Promise for Tomorrow
2008 Annual ALS Clinical Management Conference
January 24 to 26, 2008
Marriott Newport Beach
Newport Beach, CA
This year is the Tenth Global Day of Recognition of ALS/MND.
As a day of recognition it is a wonderful coming together of all who engage in the fight against this insidious disease.
Unfortunately, the fight against ALS/MND not only brings out people with passion, commitment, dedication and hard work, but it also brings out those who would offer false hope, and unproven treatments, to people who are desperate for anything that will slow, stop or reverse this cruel disease.
ALS/MND is no different than any other human endeavour – there are always people willing to peddle myths, promise hope, claim cure but mainly remove money from the hands of those who are desperate to remove ALS/MND from their lives.
TORONTO, June 1, 2007: Guilt. Abandonment. Sorrow. Confusion. Isolation. These are just some of the feelings a child whose parent has ALS may experience on a regular basis. Now there is hope. Jane McCarthy, director of services and education at the ALS Society of Canada, has developed a web site-based information and support program, specifically for young children and teens called als411. Launched in December 2006, als411 provides children with resources to gain knowledge about the disease and to explore how to cope with their situation
TORONTO, June 1, 2007: June is ALS awareness month in Canada. Throughout each province, public awareness and fundraising campaigns will be carried out with the WALK for ALS, the sale of cornflower lapel pins and golf tournaments.

Print this page