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jmaggiem

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Hi again! My second post tonight! Since beginning my work as a caregiver to a young ALS patient, my mind has been on overdrive researching, reading, watching movies, visiting the ALS society in Vancouver. I'm a student nurse and am surpised that in school we barely touched on the subject. The most horrifying fact I've learned is that just as many people die of ALS in Canada as they do from AIDS. ANd yet, AIDS has millions of dollars in funding for research, whereas Canada only allocates $15,000 per year to ALS. I just finished reading "cries of the silent" by Evelyn Bell and am now reading "Laugh, I Thought I'd Die" by Dennis Kaye. So these statistics are from those books...but I am fairly sure they are still somewhat correct? Anyways...I've been thinking and thinking of what I could do as a fundraiser and a project of awareness. I know myself, as one small person, can't really do much...but I feel in my heart and soul that I NEED and WANT to do something! How can people not know about this? Back in Feb/Mar...Dean, the man I work for was on a short clip on global news in Vancouver. His son, McKinnley, decided for his 8th birthday that he did not want any gifts from his friends, just money donated to the ALS society. I think he raised around $800. SO if one small determined 8 year old child can make a contribution, than so can a 31year old nursing student! One idea I have recently come up with is to make necklaces, bracelets and pendants.....I love working with beads and such and thought about making a small batch and seeing if I could sell them through the ALS society, or forums like this or even ebay. I checked on ebay and saw a red, plastic bracelet that someone had made (much like the Lance armstrong yellow ones) for ALS...but they were $24 US and didn't say anything about donating the money to ALS. What do you all think about my idea? SOmething small to start off with anyways?
 
You will find that many of the people here feel the same as you do regarding funding. It is not a huge top ten disease, and since it strikes later in life, the numbers don't seem to qualify for dollars as others do. However, the tide seems to be turning in our direction. If you look at any of the data from the walks across the country, you will see the numbers are going up for awareness and contributions. More communities are starting their own walks, branching out from some of the others, but the dollars are coming in regardless how they are spreading out. Our committee here in Brampton Ontario were fortunate to have some creative people/ family/friends of PALS to support us. One did a dart tournament , you will see Al, 'gods gift' status who posts here, his niece organized a euchre night at her school, and a walk for the younger children the day before our walk. Some people received large gifts for the walkers as prizes, which we raffled off instead of giving them away. We have the ALS purple bracelets sold for 5.00 each at the walk, and during a mall display we did for two evenings. We have a few more creative ideas for the fall, but it takes people to help out. And time. Perhaps the school of his son can raise awareness. Al was 'voluntold' and did a tremendous information session for the school his niece teaches at. He had them spell bound from what I understand. If his father, or yourself can go in to speak the children, organize a walk on behalf of ALS, you raise money, you raise awareness.
I understand the NEED and WANT to concept. It kinda drives you, and it is what drove me to join in and help in anyway I could. My reasons for being apart of our committe may be null and void at this time, but I have met so many incredible people along the way, they will be my driver regardless if I discover my initial reasons has been 'clouded' , or misdiagnosed. I am single mother of four kids, and work full time. The word "free" time is not a common daily part of my vocabulary. But as many have said, if you reach one person, you have been successful. As you go along, our motto is 'Fun, Awareness, then Money'.
So, work on the school the son attends, the community surrounding them, and you may be surprised by the domino effect it may have.
 
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