Thank you.
Madam Chair and members of the committee, thank you very much for this opportunity to inform the subcommittee about ALS.
Before I get too far along, I just want to comment that I've been in Ottawa now about three times over the last four weeks. We were here on October 5, when we came here for our annual Hill day. We came here with three asks: for more funding for CIHR; consideration of compassionate care; and an ask around benefits for veterans with ALS.
I had the good fortune of meeting with Minister Blackburn on October 5, and we had a good discussion about benefits for veterans with ALS. I was invited back on October 15 to participate in a press conference with him, at which time he announced the granting of benefits to veterans with ALS, which is outstanding. My thanks to the Prime Minister for his personal intervention, and my thanks to Minister Blackburn for the initiative that was taken. It was very, very proactive. So that's one of the asks down.
During the October 5 Hill day, I had an invitation to attend a luncheon, where Mr. Ignatieff brought forward his platform with respect to compassionate care. We applaud that, and also hope and encourage all parties to put compassionate care into their platforms. So maybe that's another one partially down.
Now our ask is focused on getting more dollars for CIHR.
I've been president and CEO of ALS Canada for a little over seven years now, and I'm going to provide you with a little background on the organization. The Amyotrophic Lateral Sclerosis Society of Canada, ALS Canada, is 33 years old. It's a nationally incorporated health charity. It is composed of a volunteer board of 24 directors, most of whom are touched in some fashion. Those who are on the board will often seek their other friends and bring them onto the board. So it's a very passionate group. There are 10 provincially incorporated ALS societies, so in total there are 11 across the country. Each of those 10 has one representative on my board of directors, composed of the 24 individuals.
A little over 30 years ago the idea of creating a health charity called ALS Canada was conceived by a group of senior neurologists. Their rationale was simply that the disease had been around, it had been identified by Charcot back in the 1800s, and a cause and cure had still not yet been identified. So the group got together with the primary focus of research, and that has been the mandate for the past 33 years.
You heard a lot about research back on June 8, when we had the first opportunity to be here. You know that funding of research is our prime goal. In 2003 we were funding around $500,000 a year in research in partnership with CIHR and Muscular Dystrophy Canada, and now in 2010 our research investment in our budget is a little over $2 million. So there's been a great growth in the dollars made available.
About eight years ago the board of directors decided there was more that we could do beyond the research mandate, and we decided that we would start to address the quality of life issue, which has been the province and mandate of the provincial societies. Specifically what we do is to provide assistance to the ten provincial societies in their delivery of the support that is their purview. So we have resourced up with staff. We don't deliver, because that's in the purview of the provinces, but we assist.
We have a somewhat unique relationship as the 11 ALS societies. We have all agreed that moneys raised for research anywhere in the country, whether by ALS Canada or by any of the ten provincial societies, will flow to ALS Canada so that there is one central area of competency and we don't fragment the available dollars. I think that's somewhat unique in the health charity field.
On our support mandate, we have created resources for people with ALS and also for those individuals who want to know more about ALS. They may be friends or family who have come into this world they had never heard of before and are feeling lost. We have created a manual for the newly diagnosed individual, and we make that available through each of the ten provincial societies. It's also available through all 15 of the ALS clinics from coast to coast and is also available online. It's downloadable off our website.
We've developed a family physician's guide to ALS, because the family physician is often the first individual a patient comes to with symptoms. We've put it together in a CD-ROM. It's been revised, reviewed, and sanctioned by physicians, and we distribute it across the country to as many individuals as can. We make it available to physicians online, as well.
We have all the current information on ALS on our website as well as all the information on research. When individuals are newly diagnosed, and later along, they're anxious to know what's going on in research, and we are a prime source of that information.
About three or four years ago we made a decision to focus on the children of individuals who have ALS. What we were learning was that when there is a diagnosis, both of the individuals involved, the individual with ALS and the partner, focus very much on themselves. One leaves work; the other becomes a prime caregiver. Children are very often, not intentionally, moved to the side. They're sheltered from the information.
First off, we started an interactive website that has age-appropriate information for children so that, depending on where they are and what age they are, they can identify things that will give them a sense, in a non-intimidating fashion, of what ALS is. It's also available in booklets for the three different age groups.
This year, just in September, we initiated a youth retreat. We went to all of the provinces and identified individuals with ALS who had children, or children who had gone through an ALS experience, and invited them to the Toronto area for a retreat. We had about 17 individuals from about age 15 or 16 through to 22, and they came together for a weekend. The recurring comment we heard from the youth was that this was the first time they had been able to talk to people who knew what they are talking about. They didn't have to explain ALS. It was the first time they had been very comfortable just being able to talk about what was going on.
We hope to continue with that program. The youth went away energized and actually have turned into a bit of a social media group. They are getting the word on ALS out through their Twitter and Internet community.
ALS Canada is a small health charity. We have 11 staff to run the organization. Our annual budget is slightly under $4 million, $2 million of which goes into research. We don't look for and don't receive government funding. We do the fundraising ourselves. We have a donor base that wants to see solutions, and consequently they are very generous.
We are a founding member of Neurological Health Charities Canada, the NHCC. Again, we applaud the government for funding of $15 million for the national population health study in neurological diseases.
I think that is almost the ten minutes.