Print this page

What's New

Recent and breaking news on ALS/MND - Including research and treatments:

01/05/08
The Government of Canada honours 2008 Thérèse Casgrain Volunteer Award recipients during National Volunteer Week   OTTAWA, ONTARIO, April 30, 2008—The Honourable Monte Solberg, Minister of Human Resources and Social Development, today honoured Ms. Elizabeth Grandbois of Burlington, Ontario, and Dr. Kwang Yang of Surrey, British Columbia, as the recipients of the 2008 Thérèse Casgrain Volunteer Award at the National Arts Centre. Each year, in recognition of the importance of volunteerism, the Thérèse Casgrain Volunteer Award honours two outstanding individuals for their contribution to their communities.  Thérèse Casgrain was the founder and president of the Quebec League of Women’s Rights and helped Quebec women gain the right of vote in 1940. The Government of Canada values the contributions that volunteers make to create safer and healthier communities,” said Minister Solberg.  “It is through the efforts of people like Ms.  Grandbois and Dr.  Yang that we can aspire to a more vibrant, stronger and better Canada.” Ms. Grandbois, living with amyotrophic lateral scleroris (ALS), or Lou Gehrig’s disease, has increased awareness of the disease and raised funds for ALS patients through Elizabeth's Concert of Hope.  She has helped to raise over $2.5 million for ALS research and support services.  She is the recipient of numerous municipal and provincial awards and received the Governor General’s Meritorious Service Medal in 2004.     BACKGROUNDER 

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.
 The Thérèse Casgrain Volunteer Award is open to all Canadian citizens, with the exception of members of the Thérèse F. Casgrain Foundation, elected officials of government while serving in office, past recipients of the award and employees of Human Resources and Social Development Canada.  Nominees may be sponsored by an organization or three individuals. To find out more about the Thérèse Casgrain Volunteer Award, please visit www.hrsdc.gc.ca.  The 2008 Thérèse Casgrain Volunteer Award Recipient Elizabeth Grandbois In 1997, at age 45, Elizabeth Grandbois was a registered nurse, wife and mother.  She had a busy, but perhaps not extraordinary, schedule of volunteer activities.  That year, her life was radically changed as she was diagnosed with amyotrophic lateral sclerosis (ALS).  ALS, also known as Lou Gehrig’s disease, is a rapidly progressive, fatal neuromuscular disease.  The disease afflicts approximately 3,000 Canadians, and there is no effective treatment or cure.  The average life expectancy for a person living with ALS is two to five years.  Elizabeth is one of only 10 percent of people with ALS to survive more than 10 years post-diagnosis. The Burlington Ontario resident established Elizabeth’s Concert of Hope in 2001 to raise money for ALS patients and to raise awareness of the disease.  It was her hope that increasing the profile of ALS could lead to more funding for research and eventually a cure.  At the time, Elizabeth had no ties with the arts community.  All she had was determination and a love of music.  She wrote hundreds of letters asking for support.  Despite her inexperience as a public speaker, she began giving talks at public events.  As a result, she garnered widespread support for the concept of a fundraising concert.  Her spirited determination attracted performers such as Susan Aglukark, Michael Burgess, Dan Hill, and Quartetto Gelato to the concerts. Elizabeth’s Concert of Hope ended with a national tour in 2007.  The tour traveled to Vancouver, Calgary, Winnipeg, Regina, Ottawa, Halifax, Summerside, and Corner Brook.  Each concert reflected the musical culture of the region, and Elizabeth was present at every performance.  The tour was sponsored by Tim Hortons, Via Rail and BBDO Canada, with support from Great West Life, Scotiabank, Petro-Canada and Bell Canada.  In just six years, she helped to raise over $2.5 million for ALS research and support services. Elizabeth was the subject of many documentaries, including a one-hour documentary on her life that has been screened in schools, hospitals and community centres across Canada.  She is the recipient of numerous municipal and provincial awards and received the Governor General’s Meritorious Service Medal in 2004.


    
04/04/08
 ALL FOR KIDS: SHEDDING SOME LIGHT ON A TOUGH SUBJECT 

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.

04/03/08
A collaborative research project partly funded by the Motor Neurone Disease (MND) Association and led by Professor Chris Shaw at the Institute of Psychiatry, King’s College London, has yielded a significant advance in MND research. Researchers have found that mutations in a gene coding for the ‘TDP-43’ protein cause MND in one family affected by the rare, inherited form of the disease. This result follows recent research linking the accumulation of TDP-43 protein in nerve cells of people with MND but not in unaffected individuals.  Professor Shaw says: “We are very excited by this discovery. The new gene mutations tell us that the TDP-43 protein, which accumulates abnormally in MND, can be directly toxic to motor neurons, instead of being an innocent by-product of the disease process, as was previously thought. It also means we develop new and better disease models, which will bring us closer to developing more effective therapies.” Brian Dickie, Director of Research Development at the MND Association, says: “The discovery of a new cause of the disease is of international importance, allowing researchers around the world to rapidly generate more pieces of the complex puzzle that is MND. This new information will be a spring board to greater understanding of the processes that cause motor nerves to die - and it is through such understanding that we will develop the treatment strategies to defeat this devastating disease.” Rare mutations identified in inherited forms of Alzheimer's and Parkinson’s disease dramatically advanced research into these fields. The MND Association and MND researchers believe that mutations in TDP-43 may make a similar contribution to the study of amyotrophic lateral sclerosis (ALS), which is a form of MND.
25/02/08
What can the Alliance Support Grant do for you? In 2007, an innovative partnership was established between ABrELA and the ALS Hope Foundation to exchange skills and knowledge in allied health and to identify future capacity building and support opportunities.  Funding was provided through the Sepulveda Grant to meet the costs of the project. Francisco Rotta, ABrELA and Sara Feldman, ALS Hope Foundation Explain. FranciscoDuring the 14th Annual Meeting of the International Alliance of ALS/MND Associations, I was first introduced to the Partnership Program and to find a true partnership spirit in Jeff Deitch and the ALS Hope Foundation, we were fortunate to receive financial support through the Alliance Support Grant and this enabled us to invite a colleague from ALS Hope Foundation to Brazil to share information. SaraDuring my week in Brazil, I travelled throughout Sao Paulo with several different physical therapists and had the opportunity to see a number of medical facilities around the city. The therapists and physicians I met were enthusiastic and passionate, and the care they provided was excellent. Being able to spend the full week in Brazil gave me the chance to meet with a variety of health professionals, but the real benefit came from having enough time to really interact on a more meaningful level and have a higher quality exchange of ideas. Since this visit, we remain in contact with the intention of making this just the beginning of building an international network.  Applications for support through the International Alliance Support Grant can be made at any time.  Material is available to support your application process.  Get your application started NOW! Apply for the Alliance Support Grant by contacting the Alliance Co-ordinator alliance@alsmndalliance.org and asking for information about the application process.    

 

   
25/01/08
  The ALS Journal,  the official organ of the World Federation of Neurology (WFN) Research Group on ALS/MND  is having a mini-make over, reflecting the very real and exciting change in pace of ALS research .  A new editor, Neurologist.Orla Hardiman from Dublin Ireland  has been appointed, and the newly invigorated Editorial Board drawn from across the world of ALS clinicians and scientists will provide regular in-depth reviews of "hot topics", in addition to encouraging  rapid dissemination of  peer reviewed clinical, translational and basic science research of high quality. .  

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/

24/01/08
Dr. Stanley H. Appel receives prestigious 2008 John P. McGovern Compleat Physician Award

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. 

12/09/07

“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.

10/09/07

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.

10/08/07
I have 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.
03/07/07
£2.3m Boost to Search for MND Cure
The Motor Neurone Disease (MND) Association of England, Wales and Northern Ireland has received its largest ever donation pledge.
26/06/07
An e-campaign set up late last year resulted in the Scottish Motor Neurone Disease Association going to the Scottish Parliament on the eve of MND Awareness Day. Members of the Scottish MND community directly lobbied their MSPs, CEO’s and chairpersons of their local Health Boards through the charity’s official website. They conveyed a message to improve funding for the association’s care services and raised awareness of MND amongst decision makers.
25/06/07
The ALS Society of Canada received a Gold Hermes Creative Award for its 2005 Annual Report. Recipients of the Gold Award are those, “judged to exceed the high standards of the industry norm.” The Annual Report was evaluated based on its concept, writing and design quality and creativity. Of the more than 3,500 entries that were submitted approximately 18 per cent received the Gold Award. The Hermes Creative Awards is an international competition for creative professionals involved in the concept, writing and design of marketing and communication programs and print, visual and audio materials. Entries come from corporate marketing and communication departments, advertising agencies, PR firms, design shops and freelancers.
21/06/07
CALL FOR PRESENTATIONS
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
21/06/07
Members of the International Alliance

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.
04/06/07
EASING THE PAIN FOR CHILDREN

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
30/05/07
Awareness Blooms In June

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.