epileric
Veteran
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I just recently got interested in the Ottawa-Carleton epilepsy foundation in Ottawa ON in Canada.
So far they've been constantly proving themselves as a rather useless organization. The first event I went to was to hear a neurologist speak. He didn't show but I got an e-mail a few days later with a beautiful apology saying he would re-schedule in 3 months & that I would be notified by e-mail beforehand.
Well about 3 months later I heard nothing so I phoned them to see when he was speaking, apparently he had already spoken the previous evening. I was very upset to have missed it after waiting so long.
Of course I got another beautiful apology but the person apologizing was proud to tell me that they had a new sponsor- it was a pharmaceutical company called UCB pharmaceuticals. She told me they even refer to themselves as "The Epilepsy Company". I checked Epilepsy-Ottawa Carletons (EOC) website & there was a link to UCB pharmaceuticals & the title "the epilepsy company" but when I went to UCB's site nowhere was that title or claim used. I did point this out to the people at EOC and the next time I checked their site the ad was still there but when clicking on their UCB banner all I got was a pop-up of a larger UCB banner rather than a link to their site.
Also, this company was sending over an "epilepsy advocate" who used their AED's and will speak to us. I told them I didn't need to hear an ad for them & they said that they were guaranteed it wouldn't be but she also said she didn't know what he would talk about. She did e-mail me a link to a site that briefly describes his experience but at the bottom (in bigger letters & brighter colour) is a link to an ad for Vimpat
Now I personally have a problem with them being sponsored by a pharmaceutical company, not because I have any issues with pharmaceutical companies themselves but because their best interests are not necessarily mine or that of EOC. EOC claims that their mission is
I am going to hear this guy speak but I will be bringing up my discomfort with being sponsored by a pharmaceutical company & if the speaker does too much promotion I will let him & the organization know how I feel. I would like some input though on what everyone else thinks is the best & most productive way to confront them and why. Any input is appreciated.
So far they've been constantly proving themselves as a rather useless organization. The first event I went to was to hear a neurologist speak. He didn't show but I got an e-mail a few days later with a beautiful apology saying he would re-schedule in 3 months & that I would be notified by e-mail beforehand.
Well about 3 months later I heard nothing so I phoned them to see when he was speaking, apparently he had already spoken the previous evening. I was very upset to have missed it after waiting so long.
Of course I got another beautiful apology but the person apologizing was proud to tell me that they had a new sponsor- it was a pharmaceutical company called UCB pharmaceuticals. She told me they even refer to themselves as "The Epilepsy Company". I checked Epilepsy-Ottawa Carletons (EOC) website & there was a link to UCB pharmaceuticals & the title "the epilepsy company" but when I went to UCB's site nowhere was that title or claim used. I did point this out to the people at EOC and the next time I checked their site the ad was still there but when clicking on their UCB banner all I got was a pop-up of a larger UCB banner rather than a link to their site.
Also, this company was sending over an "epilepsy advocate" who used their AED's and will speak to us. I told them I didn't need to hear an ad for them & they said that they were guaranteed it wouldn't be but she also said she didn't know what he would talk about. She did e-mail me a link to a site that briefly describes his experience but at the bottom (in bigger letters & brighter colour) is a link to an ad for Vimpat
Now I personally have a problem with them being sponsored by a pharmaceutical company, not because I have any issues with pharmaceutical companies themselves but because their best interests are not necessarily mine or that of EOC. EOC claims that their mission is
I feel that conflicts with the needs of a pharmaceutical company as not all therapies for epilepsy are pharmaceutical, let alone the specific pharmaceuticals dealt with by this company.Epilepsy Ottawa-Carleton’s three key objectives are to provide direct support services for people with epilepsy and their families; to provide public awareness and community education services; and, to provide support for volunteer fund raising.
I am going to hear this guy speak but I will be bringing up my discomfort with being sponsored by a pharmaceutical company & if the speaker does too much promotion I will let him & the organization know how I feel. I would like some input though on what everyone else thinks is the best & most productive way to confront them and why. Any input is appreciated.
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