AMYOTROPHIC LATERAL SCLEROSIS SOCIETY OF ALBERTA AND N.W.T.

 

 

ANNUAL REPORT

 

 

2001

 

 

 

 

MISSION STATEMENT

 

The Amyotrophic Lateral Sclerosis Society of Alberta is dedicated to making everyday the best possible day for people with ALS by providing support, facilitating the provision of care, promoting awareness, and helping find a cure.

 

www.alsab.ca

The ALS Society of Alberta

 

 

“ALS is clearly the most common cause of neurological death on an annual basis.”

– Dr. Michael Strong, research scientist at the Robarts Research Institute, London, Ontario

 

 

ALS, often called Lou Gehrig’s Disease, means Amyotrophic Lateral Sclerosis.

Sometimes it is called Motor Neuron Disease.

 

ALS can strike anyone. It can hit at anytime, regardless of age, sex or ethnic origin.

The usual age of onset is 55-65, but people under 20 have been diagnosed.

 

ALS is not a rare disease. Of every 100,000 people, between 6 and 7 will be diagnosed with ALS.

 

Between 1,500 and 2,000 Canadians currently live with ALS.

 

Two or three Canadians die each day of this devastating disease.

 

In at least 90% of cases, it strikes people with no family history of the disease.

 

ALS always results in death. 90% of people with ALS die within 5 years of diagnosis.

 

A person with ALS requires an average of $40,000 in equipment alone.

Nursing care can cost several times that amount.

 

The cause is unknown. There is no known cure or treatment that prolongs life significantly – yet.

 

ALS Fast Facts

 

STATISTICS CANADA DEATH RATE DATA

 

 

 

 

The Cornflower, A Symbol For ALS

 

The cornflower is the international symbol of ALS.  It represents positive hope for the future.

 

The cornflower is an annual or biennial plant. It originated in Mediterranean Europe, and now flourishes across Canada.

 

The Cornflower symbolizes courage. Despite its fragile appearance, it can withstand both frost and drought. Its peaceful, strong blue color never fades, no matter what it faces. People with ALS show tremendous courage and strength of character to cope with the devastating changes that occur to their bodies.

 

                                                                                               

A Message from our Honorary Chairman

 

The ALS Society of Alberta / NWT is dedicated to its Mission of "making everyday the best possible day for people with ALS."  Through the work of the Society, people with ALS have access to a high and constantly improving level of services, regardless of where in the province they live. It is an honour to be their Honorary Chair.  

I applaud the many and varied efforts that go into raising the dollars and the awareness needed to make a difference. We are better today than we were yesterday, and I am very confident we will be better tomorrow than we are today. Congratulations on all you have accomplished and all the best in 2002.

Jim Gray, O.C.

Founder and Former Chairman, Canadian Hunter Exploration Ltd.

Honorary Chairman, ALS Society of Alberta

A Message to our Volunteers

 

Simply, the ALS Society of Alberta could not exist without the 335 amazing volunteers that give us their time and expertise. Through your efforts, awareness is spread and funds are raised. This allows us to provide services for the present and hope for the future. Whether you come into the office to help the staff, sit on committees that drive our ongoing events like the Betty’s Run or begin new events, like the Walk’s to D’Feet ALS, or provide leadership and vision as board members, you unquestionably help to make everyday the best possible day for people with ALS.

 

Thank you, Volunteers – Together, we do make a difference.

 

BOARD OF DIRECTORS

 

Jim McLaughlin                                                  President

 

Tim Stauft                                                           Vice President

 

Terra Parkinson                                                 Secretary

 

Mike Wright                                                        Treasurer

 

Jim Bowling                                                        Director

                            

Doris Caouette                                                    Director

 

 

 

STAFF

 

Mary Hatcher                                  Executive Director

 

Jane Rivest                                                Client Services Co-ord. (South)

 

Patricia Ordynec                              Support and Education Co-ord. (North)

 

Anne Chapman Heinemeyer            Equipment Program Co-ord.

 

T.O. Whenham                                Manager of Resource Development

 

Julie Kerr                                         Client Care Assistant  (Calgary)

 

Lyn Skipper                                      Equipment Program Assistant

               

Helen Desjardins                              Secretary (Prov. Office)

 

Karen Andrus                                   Admin. Assistant (Edmonton)

 

 

PRESIDENT’S REPORT

 

Commemorating the International Year of the Volunteer

 

The past year has been another exceptional year for the ALS Society of Alberta/NWT. As an organization we have continued to focus all our efforts on making every day the best day possible for people with ALS and their families. This could not be accomplished without the tireless efforts of wonderful staff and dedicated volunteers. 

 

Mary Hatcher has been the Executive Director for the past four years and continues to lead the organization with compassion and clarity of vision that has helped us grow and mature. At the same time, Mary is surrounded by a wonderful group of talented and hard working staff who bring a special blend of skills and talents to their work with people we serve. The Society is extremely fortunate to have the current complement of staff in Calgary and Edmonton and owes each one of these individuals our deepest gratitude.

 

On behalf of the Board of Directors I would also like to extend sincere thanks to all the people who work as volunteers and have done a remarkable job supporting the efforts of the Society. A very special thanks goes out to all the people living with ALS who have given their time and energy to help others.  You are the beacon we all follow. Thank you to all the volunteers who have cared for people with ALS and their families. Thank you to everyone responsible for the incredibly successful Betty’s Run for ALS. Thank you to the volunteers who have made Evelyn’s Tee Off for ALS an annual success and to the people in Hanna who raised money and awareness in the Friends of Garth Hanlon Golf Tournament for ALS Awareness. Thank you to everyone in Edmonton and Medicine Hat who organized and participated in the Walk to D’feet ALS. Thank you to the dedicated folks in Edmonton who have worked so hard to maintain a successful Chapter. Thank you to all the volunteers who help in so many different ways.

 

A special thanks to all the funders, sponsors and donors who have made financial contributions towards helping us provide care and find a cure. Your support is greatly appreciated and helps us help others.

 

The ALS Society of Alberta/NWT is truly a community of people who live out the mission “to make every day the best day possible for people with ALS.”  Together we will triumph over this devastating disease.

 

 

Jim McLaughlin, President

 

 

EXECUTIVE DIRECTOR’S REPORT  

 

2001 was a year of strong growth and positive change for the ALS Society of Alberta.  “Making everyday the best possible day for those with ALS” remains our focus in everything we do, and we are doing it better than ever before.

 

In Northern Alberta, we welcomed Patricia Ordynec as Support and Education Coordinator, and Karen Andrus to provide support to the office and to volunteers. We also moved to a bright, spacious new office, which dramatically increases our ability to provide services in Northern Alberta.

 

In Southern Alberta, Julie Kerr joined the Client Care team, providing support to people with ALS in Calgary.

 

The Provincial team also grew. T.O. Whenham joined us as Manager of Resource Development to oversee and grow the fundraising and awareness programs. Lyn Skipper joined us to assist in managing the Equipment Program.

 

The ALS Alberta Equipment program continues to grow and is serving our ALS Clients better than ever before.

 

There has been a huge growth all across the province in the demand for in-services and workshops requested by community groups and health care providers.  In 2001 Jane and Patricia combined to provide more than 25 sessions, reaching more than 500 people. As well, staff members are increasingly being asked to present at regional and national workshops and conferences.

 

ALS Alberta continues to be heavily involved with the Alberta Partnership for Health and is working ever more closely with Hospice Calgary and Pilgrim’s Hospice in Edmonton as well as with the Palliative Care Association of Alberta.   Because the ALS Society serves a small population with very high needs it is greatly to our benefit to address mutual issues and concerns with other health charities and consumer groups. 

 

 

Mary Hatcher

Executive Director

 

 

 

Treasurer’s Report - Year Ended December 31, 2001

 

 

The year 2001 saw total revenues increase to $605,105 up by $209,255 over the previous year. This coupled with restraint on expenses enabled the Society to achieve a modest surplus of $16,574 compared with a deficit of $66,440 the year before.

 

Once again the budgets were prepared with the involvement of those responsible for achieving the targets set in those budgets which augurs well for reaching the budgeted revenue and expense levels in 2002. For the first time, departmental expense statements are now prepared on a monthly basis, showing both the monthly and year to date figures for actual and budget amounts. This improves our ability to pinpoint and correct any variations from the budgeted level of expenditures should these occur.

 

The Society still faces, quite likely will always face, the need for a greater level of funding, but I believe that steps taken in 2001 have set us on the right path to achieve even greater results in the future.

 

My thanks to all those who have helped me in the preparation of budgets and improved financial reporting.

 

Mike Wright

Treasurer

 

 

 

 

STATEMENT OF FINANCIAL POSITION

 

DECEMBER 31

 

 

 

 

ASSETS

 

                                                                                                                                                           2001                       2000

 

CURRENT:

   Cash and short-term investments                                                                                    $ 367,957              $ 245,762

   Accounts receivable                                                                                                                  6,168                     11,596

   Prepaid expenses                                                                                                                     18,187                    15,559

 

 

LIABILITIES

 

CURRENT:

   Accounts payable and accrued liabilities                                                                        $ 113,196              $   29,711

   Deferred revenue                                                                                                                      16,439                   37,696

   Current portion of long term debt (Note 4)                                                                          10,330                   10,330

 

 

 

 

 

 

STATEMENT OF OPERATIONS AND NET ASSETS

 

FOR THE YEAR ENDED DECEMBER 31

 

 

 

 

                                                                                                                                                           2001                       2000

 

REVENUES:

   Fundraising                                                                                                                          $ 280,690              $  121,724

   Bequest and anonymous donations                                                                                      150,000                  150,000

   Amortization of capital contributions                                                                                   68,125                    42,709

   General donations                                                                                                                    63,678                    48,013

   Memoriams                                                                                                                                32,411                    25,606

   Interest and other income                                                                                                       10,201                      7,798

 

EXPENSES:

   Wages and related costs                                                                                                       228,777                  185,419

   Research                                                                                                                                  103,825                    75,759

   Amortization                                                                                                                           101,767                    84,278

   Rent                                                                                                                                             36,985                    22,210

   Client equipment expense                                                                                                       28,132                    27,451

   Office supplies and expense                                                                                                   26,957                    17,463

   Travel                                                                                                                                          19,158                    12,422

   Telephone and fax                                                                                                                     13,339                      8,931

   Awareness and education                                                                                                        11,254                      3,786

   Professional fees                                                                                                                        8,728                     18,867

   Insurance                                                                                                                                     4,626                       3,246

   Memberships and dues                                                                                                              3,462                          930

   Miscellaneous                                                                                                                             1,521                       1,528

 

EXCESS REVENUES (EXPENSES) FOR THE YEAR                                                              16,574                 (66,440)

 

 

 

 

 

RESOURCE DEVELOPMENT REPORT

 

 

Our participation in the prestigious Fundraising and Resource Development Project sponsored by the Kahanoff Foundation resulted in a number of very positive developments for the Society. Most important was the hiring of a full time Manager of Resource development for the first time.  This has allowed us to develop a solid and achievable Resource Development Plan that will ensure our long term viability and growth. Existing programs are being strengthened, and new programs are emerging that will make us stronger into the future.  

 

 

In September 2001 the Walk to D’Feet ALS was born. This national signature event raises huge amounts of awareness and significant funds for client services and research. 8 Walks were planned, and the goal was to raise $250,000. In the end, more than $556,000 was raised. Incredibly, $105,000 was raised in Edmonton and Medicine Hat. In 2002, 24 Walks will be held nationwide, including five in Alberta. These new events have quickly become an important piece of our fundraising program.

 

 

Our capacity to provide advocacy and increased awareness at the government level is important, and we are working to increase our effectiveness. In 2001, we responded to the Mazankowski report, reminding the Alberta government that quality end of life care concerns must be addressed as well acute care and wellness.  As well considerable effort has gone into developing our very own web site (www.alsab.ca) and we look forward to launching it early in 2002.

 

 

T.O. Whenham

Manager, Resource Development

 

 

 

 

 

                                                                    

 

ALS INFORMATION

 

What is ALS?

 

ALS is a rapidly progressive neuromuscular disease.  It attacks the nerves that the body would normally use to send messages from the brain to the muscle, resulting in weakness and wasting.  Eventually, the individual with ALS is left completely paralysed, with loss of speech, swallowing and breathing. The mind remains completely alert and lucid.  A lively, unimpaired mind is trapped in an immobilized body.  The average life expectancy at diagnosis is 2.5 years.

 

What causes ALS?

 

In the majority of cases, the cause is unknown. Research is being conducted in areas relating to genetic predispositions, viral or infectious agents, environmental toxins and immunological changes. Some of this research is happening right here in Alberta.

 

Is there a cure?

 

Simply, no. There is no treatment that prolongs life significantly. Some drugs now available and others being developed will offer new treatment options. Research is investigating ways to reverse the disease. There may be a cure, eventually.

 

What are the effects of ALS?

 

As the disease progresses, individuals become completely dependent and increasingly unable to communicate their needs. Institutionalization is rare; care is almost always provided by family members. Often, family members must quit their jobs to provide this care. This adds enormous financial strain to the already severe emotional stress on families coping with the impending loss of a loved one.

 

What does the ALS Society of Alberta do?

 

 

Information, Referral and Home Visits: We provide individuals with ALS and their families information about ALS, and the services that are available.  We provide further help in navigating the health care system and in accessing equipment and services in a timely fashion.  Staff members conduct home visits to offer support, and stay in touch by phone and E-mail.

 

 

Equipment and Assistive Technology:  Mobility devices, such as power wheel chairs and scooters, and communication equipment, such as laptop computers and electronic speech devices, give freedom of movement to the paralysed and a voice to the silent. These items, as well as hospital beds and lifts are all equipment that a person with ALS will need during the course of the disease. ALS is a rapidly progressive disease, and individuals cannot afford to wait for the equipment they need. The ALS Society provides equipment, works with families and insurance companies to fund the equipment and makes up any funding shortfall. The society maintains a pool of equipment so that the right piece of equipment may be available immediately. 

 

 

Support Groups:  The ALS Society believes that by sharing the frustrations, fears and inspirations of individuals and family members, barriers of isolation and loneliness can be broken.  Bringing individuals with ALS together provides an opportunity for each to help and support the other.

 

 

Awareness and Education: To beat this disease we must make people aware. The Society does this by publishing books, producing videos, maintaining a website and promoting the ALS cause at special events. The society also works with medical professionals and caregivers to make sure they know about the disease and how to deal with it.

 

 

 

 

OUR VISION

 

 

Through increased, province-wide awareness, provide hope and access to equitable levels of support for people affected by ALS

 

 

 

OUR VALUES

 

 

RESPECT:  We treat everyone as people first and foremost, and respect their rights and responsibilities.

 

CARING:  We show compassion.  We help those in need and avoid harming others.

 

SERVICE:  We are involved in efforts to serve the needs of people affected by ALS, without the motive of personal gain.  We provide services in a fair and equitable manner.

 

ACCOUNTABILITY:  We are responsible for our decisions and actions made on behalf of the society.  We demonstrate due diligence in fulfilling our commitments to our members, their families and friends, volunteers, funders and all others who provide support to our members.  We are committed to the continuous improvement of our Society for the betterment of our members.

 

PASSION:  We demonstrate a strong, emotional enthusiasm in our endeavours to make a positive difference in the lives of people affected by ALS.  We communicate this enthusiasm to others in an attempt to encourage others to share in our vision.

 

QUALITY OF LIFE:  We endeavour to ensure that all people in Alberta with ALS are afforded the highest level of support and services.