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Associations and Other Resources

ALS Society of Canada

Resources Access Information Additional Information
Talking to Your Patients Children About ALS
A Primer for Health Professionals
Contact your Provincial ALS Society to order these booklets, or click on the titles to download. International orders can be fulfilled by emailing If you have feedback on these booklets, email
Talking to Young People About ALS
For schools educational professionals
When Someone Special Has ALS
When Your Parent Has ALS - A Booklet for Teens
Parental Information Guide: Helping Children Cope with ALS

ALS Society of Alberta

Resources Access Information Additional Information
“Youth AnnihiLateS ALS” Website Youth AnnihiLateS ALS offers ideas for lots of fun and cool ways for youth to get involved in supporting the ALS Society in their own unique way.
Grandpa, what is ALS? Email: The is a story of a grandfather, who develops ALS, and his grandchild who learns to accept and understand the disease.
“Support for Champions - The ALS Fund for Kids” Website Modeled on the New Brunswick program (see description below). Provides funding for children in Alberta 16 years of age and younger. In addition to sports, or other recreational pursuits, the program also makes funding available for formal activities around grief management.

ALS Society of New Brunswick

Resources Access Information Additional Information
“Support for Champions—The ALS Fund for Kids” Website The Mission of Support for Champions is to promote a healthy passage for the children of ALS families by providing them with an uninterrupted journey through a difficult period.

Categories for funding children living in New Brunswick include: educational scholarships, after-school/extra-curricular activities, and basic necessities.

To apply call 506-532-5786 or 1-866-722-7700, or e-mail a request to

ALS Association, St. Louis Regional Chapter

Resources Access Information Additional Information
ALS Activity Book Email:
Or send $10 + $2 shipping in U.S. funds to:
The ALS Association, St. Louis Regional Chapter
5615 Pershing Ave. Ste 20, St. Louis, Mo., 63112, USA
20-pg book with different games, activities, and learning pages designed to education children on ALS
“ALS Pen Pal Program” Website  

ALS Association, Georgia Chapter

Resources Access Information Additional Information
Our ALS Family Playbook: Activities for Helping our Children Cope Visit or send $25 $10 shipping in U.S. funds to:
Rising Sun Center for Loss and Renewal
2848 Windsor Oaks Trace
Marietta,GA.,30066, USA
Activities in the playbook can help children understand ALS. Children are encouraged to proceed through the activities gradually as the illness progresses.
“Kids Korner” Website Stories and Information for children and their parents

ALS Association, Ohio Chapter

Resources Access Information Additional Information
“Kids 4 Cure” Website Inspirational story of two brothers who have raised local awareness for ALS and raised funds for their local chapter

ALS March of Faces

Resources Access Information Additional Information
“What is ALS?” FOR KIDS Website An interactive computer animation designed to help children understand ALS. Most suitable for children under the age of 12

ALS Clinic at McMaster University

Resources Access Information Additional Information
Someone you know has ALS: A simple way to help children understand and cope with ALS Call 905-521-2100 ext 76870
$5.00 each or $40.00 for 10 (including tax)
This book gives information on ALS and tips on how to manage feelings associated with the disease.

Les Turner ALS Foundation

Resources Access Information Additional Information
In my dreams…I Do! Available through the foundation for $12.95 (U.S. funds)
The story of two sisters who escape the world of their grandmother's physical limitations to the freedom of her dream realm where anything is possible


Amyotrophic Lateral Sclerosis

ALS is not a curable disease, but it is a treatable one. Treatments are now available that can make a major difference in prolonging life and enhancing the quality of life for people with the disease, and there are treatments for many of the symptoms of ALS that can help ease its burden. Although the diagnosis of ALS can initially be devastating, the vast majority of people discover new courage from within to battle this disease and live life with vigor and enthusiasm. The information in this book will prove useful to people with ALS and their families both in managing the disease and living within its limitations. The cost of the book is $22.95 US Funds.

For more information contact Demos Medical Publishing,
386 Park Avenue South,
New York, NY 10016
Click here for page URL

Luckiest Man: The Life and Death of Lou Gehrig

ALS is associated with the New York Yankees first baseman Lou Gehrig who played in a record 2,130 consecutive games before the disease forced his premature retirement in 1939.

Jonathan Eig—the author of a new biography on Lou Gehrig—has been receiving praise for his work. Eig’s biography addresses different aspects of Gehrig’s life before he was struck by ALS, with his athleticism and career as a professional baseball player. Eig portrays Gehrig as a human being who, throughout his life, was admirable while not being perfect.

Luckiest Man: The Life and Death of Lou Gehrig includes letters that Gehrig had written to his doctor, Paul O’Leary. These letters are the only available record of Gehrig’s last days, and detail his aches, pains, and strong desire for a cure.

Luckiest Man follows Gehrig’s family relationships. Attention is also given to the friction between Gehrig and Babe Ruth.

In the last chapters of the biography, in which Gehrig is succumbing to ALS, the medical aspect of his life story is presented with compassion.

The biography—published in April 2005—is available for $37.50 in book or cassette form. The running time for the audio version is approximately six hours, and the biography can be purchased from

Tales from the Bed on Living, Dying, and Having It All
By Jenifer Estess

As told to Valerie Estess
Foreword by Katie Couric
Sisters in the entertainment world tell their story and that of their foundation - Project ALS
Click here for an excerpt

Patrick and the Giant
By David G. McNelis

When Patrick, the village storyteller, hears his name being called out by a thirty foot tall giant, he is terrified. Using humor to hide his fear, Patrick confronts the giant and discovers that this hideous creature has cursed him with an evil sickness, and has only days to live. With his body quickly weakening, from the giant's illness, Patrick decides he must slay the monster in order to survive. Aided by his family and Connor, the red bearded blacksmith, the battles begin. It soon becomes apparent that destroying a mighty giant is no easy task. However, Patrick refuses to give up which all makes for a tale full of exciting confrontations, unexpected twists, and plenty of laughs and tears along the way.

Tuesdays with Morrie
An Old Man, A Young Man, And Life's Greatest Lesson

by Mitch Albom

Morrie Schwartz was Mitch Albom's college professor and mentor. Knowing he was dying, Morrie visited with Mitch (an ALS patient) in his study every Tuesday. Their rekindled relationship turned into one final "class": lessons in how to live. This book has been on the best seller list over one year.

Click here for an excerpt

My Uncle has ALS
Neiderer , Theresa (2007)

“My Uncle has ALS” provides children with a glimpse of what Amyotophic Lateral Sclerosis (ALS) is and some challenges and adjustments it presents.


The Man Who Learned to Fall
A feature documentary by Garry Beitel

Phil Simmons, associate professor of English at Lake Forest College in Illinois was diagnosed with ALS when he was 35. Simmons celebrates the wonder of life even as he is slowly dying of this disease. As his muscles deteriorate and his body becomes increasingly paralyzed, Simmons continues to 'wrestle joy from heartbreak' at each stage of his ongoing losses.

"At one time or another, each of us confronts an experience so powerful, bewildering, joyous, or terrifying, that all our efforts to see it as a problem are futile. Each of us is brought to the cliff's edge. At such moments we can either back away in bitterness or confusion, or leap forward into mystery," says Simmons, in his book "Learning to Fall," published by Bantam Dell.

Philip Simmons
From Learning to Fall – published by Bantam Dell
Duration: 77 minutes
Price: Video $30, shipping and taxes are extra
DVD $40, shipping and taxes are extra

To order contact:
Beitel/Lazar Productions Inc.
2218 Old Orchard, Montreal, PQ H4A 3A8
Phone 514-487-4562
Fax: 514-487-9729


Manual for People Living with ALS

The fourth edition of the Manual for People Living with ALS Manual is an excellent educational resource and tool. It helps readers to organize personal health information and stimulate discussion between patients, family members, and their health-care providers about managing ALS care and coping with an often rapidly progressive neurological condition. The Manual is a very valuable resource, especially for those recently diagnosed with ALS.

What is covered in the Manual?
  • An overview of ALS, signs and symptoms, research status
  • Tips and tools for persons with ALS and family caregivers
  • Where to go for help and support (local support information can be obtained from provincial ALS Societies)
  • Disease management information about who makes up the ALS health-care team, mobility and independence, swallowing and nutrition, speech and communication, breathing and lung function, oral care, end-of-life issues, and advance-care planning
  • Assistive equipment and activities of daily living
  • Legal and financial considerations
  • Education and support resources
Functions of the On-LineManual:
  • It is completely searchable using the binoculars on the top of your screen
  • The table of contents is linked to their appropriate page
  • Every page has a return to main menu page, which takes the back to the table of contents
  • Every web site is active, by clicking on anything that is underlined in the document it will take you to that web site.
No fee is charged for a hard copy of the manual when ordered by people living with ALS, their caregivers, or their healthcare providers. To order, please contact your Provincial ALS Society. Libraries, schools, health-care facilities, other organizations, and interested healthcare professionals who are not currently involved in ALS care may obtain the Manual through the ALS Society of Canada for a charge of $20.00. Please call 1-800-267-4257.

Download the English Manual (Format: Adobe Acrobat; File size: 1.7 MB)


ALS Research Updates

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