Ice Bucket Challenge Helps Families Touched by ALS

Putting Ice Bucket Challenge donations to work

Supporting families as they navigate the progression of ALS

The Ice Bucket Challenge was lightening in a bottle. Thousands of people videotaped themselves dumping frigid water over their heads. It was an Internet sensation. It was fun, funny and quirky. But more than that it was an act of enormous generosity. In Canada, it raised $16.2-million ($2.68 million in Quebec) for amyotrophic lateral sclerosis (ALS), a neurodegenerative disease afflicting some 3000 Canadians, including on average 600 Quebecers. There is no cure or treatments for the disorder.

The ALS Society of Quebec is carefully considering how to allocate the Challenge’s funds to ensure they make a significant difference in the lives of families living with the disease.  Donations will be used to expand existing services and develop new ones that address the most pressing needs of the community served. The mandate of the Society is to provide quality care for those affected by ALS, and to raise awareness about ALS and its repercussions.

Some examples of existing programs include the purchase of specialized equipment not covered by government agencies, psychosocial counselling for the whole family, information, financial aid programs and support groups and services. In addition, funds will be used to develop new services that address the most pressing needs of the community served.

CROP Survey will gage patient needs

In the next few weeks, the CROP polling firm will issue three surveys to patients, caregivers and health care professionals. The goal is to gage satisfaction with the services provided by the ALS Society of Quebec and to determine the needs of those living with ALS and their caregivers. Similar surveys were conducted in 2010 and 2012, however, this is the first time the health care team will be queried. Also for the first time, the survey will ask the community specific questions about respite care. The dearth of respite care is a long-standing issue. The Society would like to get a clear idea of what type of care families are seeking. Some might prefer a bed in a respite centre while others would prefer at home care. The survey results will inform the Society’s spending decisions.

In addition to the CROP survey generously offered, the Society’s dedicated team of service coordinators, social workers and psychosocial counsellors who work one-on-one with families each day will provide input on the community’s most pressing needs. The Society will also solicit ideas from the various health care workers on its Partners’ Committee.

Members of the Program and Services Committee, a sub-committee of the Society’s Board of Directors, will review all of the suggestions, ideas and survey results. The seven member committee includes those living with ALS, former caregivers, health care professionals, staff and board members. . They will make recommendations to the board of directors on how to strategically and sustainably allocate the Ice Bucket Challenge funds.

“The Ice Bucket Challenge raised an enormous amount of awareness about the ALS Society of Quebec. We saw membership increase by 25% in September of this year. As a consequence, we’ve had increased demand for our current services and programs. Going forward, our goal remains to provide families with extra support and not to duplicate existing government programs. From the past surveys, we identified two areas that merit enhancement: respite care and psychosocial support for those living in the regions.  We’ll explore ways to improve services in these areas and others,” says Véronique Pignatelli, Director of Programs and Support Services.

“Quebecers have entrusted their donations to us. We pledge to spend the funds wisely on the most pressing,” says Ms. Pignatelli. “As always, we will continue to compassionately support patients and caregivers throughout their journey with ALS.”