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Medical Forum / Diseases and Disorders / Epilepsy / April 2005I need your help
First let me start by congratulating the denizens of this group on a very healthy discussion. I have been lurking for a couple days and learned *a lot* about this condition (not that I had a deep well of knowledge to start with!). The most shocking piece of information has to be the "cocktail" of medicines, dosages, and side-effects that some have to handle on a daily basis. That said, please allow me to explain my interest in this condition, and why I need your help. I am a volunteer serving on the board of directors of an organization that provides support for people with epilepsy and their families (seminars, printed materials, etc.), provides educational material to schools and businesses, advocates on behalf of people with epilepsy, etc. As you can see, this is quite a BROAD mandate which can easily lead the organization down a slippery slope of too much diversification and very little concrete, measurable outcomes. My background in the private sector has obviously made me very susceptible to such situations: I can't easily imagine why one would offer services that are not really needed, all the time, by a whole lot of people. The typical for-profit mentality. But this is *not* the for-profit world, this is a whole new paradigm shift in my case. Instead of trying to be everything to everyone (our resources are very limited), I have been trying to figure out the typical stakeholders and their needs. Of course, the major stakeholders are the sufferers and their families. But this is *still* a VERY diverse group! Epilepsy seems to be so complicated with its many facets, impacts, perceptions, responses, and on and on... In the private sector, I would have tossed that business plan in the bin and went on to my next product. Obviously, this situation is much different. This is a lifetime challenge I am eager to tackle! There are tons of questions in my mind as I am trying to answer "how to streamline our offerings to have the most impact with the least resources?". For example: a) what are the typical stakeholders for an organization whose whole focus is to provide relief for people with epilepsy? (I am looking for the cast of players) b) what do these stakeholders need? c) how can we meet those needs? d) what are appropriate sources of funding other that the usual suspects (government, members, etc.)? As fellow cyberdenizens, would I be able to tap your first-hand experiences? I sure do hope so! Respectfully yours, -boardmember PS. netiquette hint, in your response, please trim my text for brevity and insert your text where appropriate > First let me start by congratulating the denizens of this group on a > very healthy discussion. I have been lurking for a couple days and [quoted text clipped - 9 lines] > provides educational material to schools and businesses, advocates on > behalf of people with epilepsy, etc. Without having a 'deep well of knowledge to start with' and having to come here to learn? God help us. > Instead of trying to be everything to everyone (our resources are very > limited), I have been trying to figure out the typical stakeholders and > their needs. Of course, the major stakeholders are the sufferers and > their families. But this is *still* a VERY diverse group! Epilepsy > seems to be so complicated with its many facets, impacts, perceptions, > responses, and on and on... Good Heavens - weren't you told this before dipping your toe in??? > In the private sector, I would have tossed that business plan in the > bin and went on to my next product. Obviously, this situation is much > different. This is a lifetime challenge I am eager to tackle! Don't even think to tackle it until you learn a LOT more - and not just from here. > There are tons of questions in my mind as I am trying to answer "how to > streamline our offerings to have the most impact with the least [quoted text clipped - 3 lines] > focus is to provide relief for people with epilepsy? (I am looking for > the cast of players) What does that mean? In simple English. > b) what do these stakeholders need? Huh? > c) how can we meet those needs? You need to answer that. > d) what are appropriate sources of funding other that the usual > suspects (government, members, etc.)? Oh gawd ... > As fellow cyberdenizens, would I be able to tap your first-hand > experiences? I sure do hope so! Tough/ > Respectfully yours, > > -boardmember > > PS. netiquette hint, in your response, please trim my text for brevity > and insert your text where appropriate Bolli. Don't post here and tell us how to reply. I smell a troll. Mary (a healthy dose of skepticism deleted for brevity) I do unterstand Mary that the situation I got myself into is not for the faint of heart; but I'm glad I did and I do love challenges. These last few months, I have been trying to learn as much as possible, prepare for the board meetings, take care of governance issues, etc. The learning part by itself is like drinking from a fire-hose ;-) And by the way, I do realize that a newsgroup is the last place to come for 100% reliable information, but there is no place like it to discuss emotionally charged situations that result from unfulfilled needs. I believe my questions to be appropriate in this case Mary. I am really looking for the basic needs of people with epilepsy and those who surround them. You may not be able to help in this case, but please do not discourage others from doing so. I really need all the help I can get. Respectfully yours, -boardmember > (a healthy dose of skepticism deleted for brevity) > [quoted text clipped - 13 lines] > Respectfully yours, > -boardmember This newsgroup is predominantly for People with Epilepsy to help others with the same condition. While there are lots around who might have the time to start from Square 1 for a new organization, to pull them up to where many of us are, it might be unreasonable to expect that we have a lot of time to do that. There are many Websites posted regularly on the newsgroup if you've looked through the history, or been reading the group for more than 1-2 weeks, where information you could find useful is available. Since you're within the U.S., the Ep. Foundation of America has a Massive site at http://efa.org . If you see one of Julie's or Howdy Dave's posts, they list the www of Idaho Website and his own site he developed over the past 10 years, on his own. They're resources that are already in-place and available for use. When you said you had been active at this for 3? months but it sounded like you might not have found *any? of those sites? (efa especially), the original note sounded like it would take more time I had available. Mary has been active on this group for at least 3 years, and participated actively with our efforts to help others *with Epilepsy and their Families around the world. While others may be around more frequently *after the weekend (this group is Often quieter during this time), we have also had more than our fair share of 'drive by trolls' who don't have Epilepsy, and we can't always tell on a First Time Poster which it is. That's *unfortunate, but there was once a uk.people.support.epilepsy group, which no longer exists because a fellow in uk used the Chronic Health groups as his robot/harvest site. That's just for Background purposes, wrt. how some of the support sites have been impacted. The UK one no longer exists so far as I know. Read on and see what other responses or ideas might turn up during the *week. I haven't gone back (yet) to read your initial post: I just remember that when I looked at it, I realized I wouldn't get 'outside' this weekend if I started trying to fill in the information you need, so clicked off and onto another group I read, and cleared my Personal emails that had backlogged while I was occupied posting here. There are others across about 10 of the 24 timezones who haven't had time yet to read your original question/ conclude their weekend. Try not to be too brusque with us. I, for one, don't have the time or patience for that, and you might just hear the sound of 'windows' closing. If I find any other sites that might be of use to you, those will appear during the week once I have time to look through my bookmarks, to see if any are pertinent. (I have more than 200, less than 10% related to Living with Epilepsy, not organized for anyone but me to read through, and *that will take time.) G./ [...] G.Ross, I appreciate your insight into the dynamics of this group. I first want to apologize if I sounded paternalistic with my netiquette blurb; I was just trying to shield the readers from the pain of re-reading my post a zillion times. Also, thank you for suggesting efa.org as a first stop; in fact, I did look at it during my research and found it quite comprehensive. On a related note, I would like to know one thing (this question is open to all readers): Q: If my organization was to offer a web site but on a much smaller scale, catering to a certain geographic area (a region in Ontario, Canada), what type of content would be useful to people with epilepsy and their families? Again, just to clarify, we are a *charitable* organization (not a business) and we are not trying to compete with the more established national epilepsy organizations. We are looking for ways to serve our constituents (a.k.a. "stakeholders" but some readers don't like this word) within the region by offerring electronic and non-elecronic services. We have plenty of available volunteers that can be used to provide those services. I am leaning towards high-touch more than high-tech. Thanks again G.Ross for your time -boardmember >> First let me start by congratulating the denizens of this group on a >> very healthy discussion./////////// >> >> In the private sector, I would have tossed that business plan in the >> bin and went on to my next product. Obviously, this situation is much >> different. This is a lifetime challenge I am eager to tackle! ******* Looking back at this now. I agree with Mary. You're out of your depth. There are Multiple types of Epilepsy (seizures) and Multiple Therapies and Medications that Neurologists and Doctors study 6-10 years before starting on a Patient, and you've 'cut off' a pie that has far too wide a terms of reference, if that's where you intend to go. Is this a Private company trying to cut into what the EFA site and organization (I wrote about earlier with US Website and Organization information) that's **already in place ? But you want it for profit vs. what's already ~40 years established ? That's (I assume) why Mary posted below comment. // > Don't even think to tackle it until you learn a LOT more - and not just > from here. [quoted text clipped - 7 lines] > > What does that mean? In simple English. **G. It sounds like someone thinking of opening a Private Hospice? that will replicate what's already in-place within Hospitals and Depts.of Neurology, but skim off the 'for profit parts' with the easiest payout, so reducing the effectiveness of the whole pie ?? I can't really tell though either. When did a 'stakeholder' learn how to read a CT Scan? // >> b) what do these stakeholders need? > Huh? **G* Ditto, when patients become 'stakeholders' it's not Healthcare, it's For-Profit Body shops? >> c) how can we meet those needs? > [quoted text clipped - 3 lines] >> suspects (government, members, etc.)? > Oh gawd ... ******* Ditto. If you're going to open in order to compete with Govt, Support Groups and Healthcare already in-place, you just cut cash out of already limited resources, and it disappears into Shareholder Payouts and not to patients? Large Healthcare systems and Medicas are already strapped for Funding, without needing to compete with some new organization bringing a 'business (i.e. profit) model' into the mix. In 4-5 years us Baby Boomers start to hit 65 and the Support Systems already Funded will be strained to breaking levels without needing to fight over turf with a bunch of 'Enrons', again, fighting over turf ? I can't tell if that is what's being proposed even. // >> As fellow cyberdenizens, would I be able to tap your first-hand >> experiences? I sure do hope so! > > Tough/ ** Ditto, like she said (I guess before I did that other post), you need to do a lot more research on what you're proposing. If you intend to give Medical Support or Treatment to a Neurological Condition, you'll need to be Licenced to Practice that to start, or have Doctors already in-place, before you wander off looking for Input on what to do and how to do it, in such a general manner as you seemed to imply. You can't have that Basic Research or learning already in place, so far as I can tell, or the answers to some of what you were asking would have already been answered, in the process of setting up your 'organization'. / >> Respectfully yours, >> -boardmember >> PS. netiquette hint, in your response, please trim my text for brevity >> and insert your text where appropriate *******G. * This is a way to shoot yourself in the foot. Next time put that *First. ****** > Bolli. Don't post here and tell us how to reply. > I smell a troll. > Mary G. I wish I had read the End Before the Beginning. It sounded like that guy in Nigeria trying to get his Gold out and just needs accounts to move it to.... Maybe it's just me....// > a) what are the typical stakeholders for an organization whose whole > focus is to provide relief for people with epilepsy? (I am looking for > the cast of players) 1. People with epilepsy 2. Family of people with epilepsy 3. Partners of people with epilepsy 4. Teachers of childern with epilepsy > b) what do these stakeholders need? 1. Information that is not already there. 2. New meds with less side effects 3. Better testing devices / A better way of telling that one suffers from epilepsy (EEG is not alwasy conclusive) > c) how can we meet those needs? 1. First things first: try to learn about epilepsy, then come back here and tell us what you think we need. > d) what are appropriate sources of funding other that the usual > suspects (government, members, etc.)? Charity?  SignatureThanks. Marco The Netherlands > > a) what are the typical stakeholders for an organization whose whole > > focus is to provide relief for people with epilepsy? (I am looking for [quoted text clipped - 4 lines] > 3. Partners of people with epilepsy > 4. Teachers of childern with epilepsy Marco, you hit the nail on the head. This is exactly what I meant by stakeholders. Any others that the readers of this group can think of? > > b) what do these stakeholders need? > > 1. Information that is not already there. Can anyone elaborate as to what the stakeholders above may need? > 2. New meds with less side effects > 3. Better testing devices / A better way of telling that one suffers from > epilepsy (EEG is not alwasy conclusive) Clearly a concern! Which brings up these questions to the readership: Q1: Is there a need for a two-way dialogue between the stakeholders on the provider side (you know, the neurologists, researchers, etc) and the stakeholders on the receiving side (patients, families, etc)? Q2: How would one structure this dialogue? Which mode of discussion is most appropriate do you think? > > c) how can we meet those needs? > > 1. First things first: try to learn about epilepsy, then come back here and > tell us what you think we need. I am trying, I am trying Marco :-) But this condition is not an easy one! Remember, I am just a volunteer boardmember that had no previous experience with this condition, I wish I had more time to devote to this cause, but all I can give it is my spare time at night and weekends. > > d) what are appropriate sources of funding other that the usual > > suspects (government, members, etc.)? > > Charity? Can anyone elaborate? > -- > Thanks. > > Marco > The Netherlands Thanks for your time Marco -boardmember > > > a) what are the typical stakeholders for an organization whose > whole [quoted text clipped - 9 lines] > Marco, you hit the nail on the head. This is exactly what I meant by > stakeholders. Any others that the readers of this group can think of? Employers and co-workers of people with epilepsy - they need to learn how to handle it when a seizure occurs, and be reassured that having epilepsy does not hamper one's ability to work. Doctors (GPs) of people with epilepsy - their knowledge is often very limited and they rely on neurologists to answer all the questions. > "boardmember" <usenet@mycybernet.net> wrote in message [...] > > stakeholders. Any others that the readers of this group can think of? > [quoted text clipped - 3 lines] > Doctors (GPs) of people with epilepsy - their knowledge is often very > limited and they rely on neurologists to answer all the questions. Definitely. Even for neurologists, a co-worker had a very disturbing experience after her toddler got diagnosed with epilepsy: the *receptionist* was more helpful than the doctor in helping her locate support groups, literature, etc. I wonder what can be done to make our organization more visible at the front-lines (the doctor's office). Thanks turbinado for your note -boardmember >PS. netiquette hint, in your response, please trim my text for brevity >and insert your text where appropriate OK then, here we go: > I am a volunteer serving on the board of >directors of an organization We have $1000,000,000 of gold bonds which were left by an unknown benefactor to serve the cause of our organisation, but no-one has yet to claim them and if they are not moved soon, the new Governmental Tax Department will take them, even though we are a charity >that provides support for people with >epilepsy and their families . We have selected members of alt.support.epilepsy as a suitable group to receive these bonds, but in order to distribute them, we must first have your names, phone numbers, credit card details, PINs. dates of birth etc, so that the money may be transferred without incurring the unfair taxes which would be due by our repressive regime. I look forward to your replies. >Respectfully yours, > >-boardmember How's that? SignatureMalcolm - who doesn't feel like preparing the pupil info sheets for tomorrow's Parent's Evening and is looking for anything else to take his mind off it. <snip guff> > How's that? Brilliant. Walk the dog. So you haven't a dog? Nor have I but I'd always find one to walk when I had a deadline to meet. Deadlines are wonderful for dog walking or giving considered replies to nonsensical posts :-) Or you could always do the pupil info sheets and have the rest of your day to yourself with no niggles ... that's the sensible solution though, the sort of thing said to pupils about homework :-( Mary >Or you could always do the pupil info sheets and have the rest of your day >to yourself with no niggles ... that's the sensible solution though, the >sort of thing said to pupils about homework :-( > >Mary Since when have you known me to be sensible? SignatureMalcolm >>Or you could always do the pupil info sheets and have the rest of your day >>to yourself with no niggles ... that's the sensible solution though, the [quoted text clipped - 3 lines] > > Since when have you known me to be sensible? I did say "though" ... :-) I hope you remember what you said next time you berate a pupil for not doing an assignment :-) But don't ever be sensible, that way lies madness. Mary >I hope you remember what you said next time you berate a pupil for not doing >an assignment :-) :-P > >But don't ever be sensible, that way lies madness. Too late :( SignatureMalcolm [...] > How's that? > -- [sarcasm mode ON] You've left out the family members who were killed during the uprising in Elbonia. I need to get the only survivor outa there ASAP [sarcasm mode OFF] -boardmember >[...] >> [quoted text clipped - 6 lines] > >-boardmember I tried to find them but there was no-one in the Elbonian phone book under the name 'Boardmember'. SignatureMalcolm >>[...] >>> [quoted text clipped - 9 lines] > I tried to find them but there was no-one in the Elbonian phone book > under the name 'Boardmember'. Indeed. A name might make one more inclined to warm to the poster. I wonder why someone with so little knowledge has been given the assignment. And how has your assignment gone, Malcolm? See me. Mary >>>[...] >>>> How's that? [quoted text clipped - 12 lines] > I wonder why someone with so little knowledge has been given the > assignment. *** I think the registration 'name' (boardmember) etc. was probably an unfortunate mistake by whoever put them in charge of gathering info. to help Recoup some level of Support for the Local office (to where I live). From the Timezone and source stuff I scanned over the weekend, they appear to be part of Toronto (Canada) Epilepsy Support (one I support with $$), or Ontario Chapter of the National? org... The Toronto Site (at least before they Moved for about the 4th time in last 3 years) already HAS an Email address and possibly a Website? so I couldn't tell later if they were starting from Scratch or planning to add information gathered here to the Already Assembled stuff. (I'm getting concerned, as a current Donor (above) about the no. of times they're Moving about Toronto. If My Donations are Paying for Office Moves each 8-12 months, over last 3 years, I'll look for an Unrelated Charity who'd use my donations better. They haven't had a Convention or Speaker I've wanted to see for Last 3 years, but now have $1200+ in Donations that I assumed was being used to teach New People diagnosed with Seizures coping skills, job hunting skills, etc. From our weekend 'exchange' I'm concerned now that the Critical Mass of People who knew what they were doing there when Geoff Bob, and Others left last year, may have just left a Shell Office in-place, and they're starting Over.... I don't know what the Status is of the Provincial Organization (Ontario Epilepsy), since I was never involved with *them nor donated to them. I expect they are a Newsletter outlet for the 'outlying areas' of the Province - which happens to be larger in Area than about half of Europe.) G./ > And how has your assignment gone, Malcolm? > See me. > Mary >And how has your assignment gone, Malcolm? It got done. I am now back home after a ratty day at school, twiddling my thumbs for a couple of hours before I have to go back and face an equally ratty host of parents until 10 o'clock. And tomorrow night, and Wednesday. And four times during the past 2 weeks. Gee, I just love Parent's Evenings, I'm just so good at them </sarc> >See me. No. You should have sent back the form, signed in and got yourself on my roster. Now you'll have to wait until next term. There are no available slots left. I I were allowed to drink I could down a bottle of vodka ATM. but just to bring a smile to your face: I had a stroppy note from a parent saying their child didn't understand their homework and without a textbook they were unable to help him. Please would I supply the information and they will go through it with him. The subject?... Sex education :) SignatureMalcolm >>And how has your assignment gone, Malcolm? > > It got done. Well done. Go up one and give the rubbers out. > I am now back home after a ratty day at school, twiddling > my thumbs for a couple of hours before I have to go back and face an [quoted text clipped - 3 lines] > > And four times during the past 2 weeks. And they wonder why teachers fall over and leave so often! > Gee, I just love Parent's > Evenings, I'm just so good at them </sarc> I bet you are. You smarmy git. >>See me. > No. You should have sent back the form, signed in and got yourself on my > roster. Now you'll have to wait until next term. There are no available > slots left. Oh - it wasn't a request. It was an order :-) > I I were allowed to drink I could down a bottle of vodka ATM. I'm still suffering from over indulgence in champagne and wine and chocolate cake and duck and other things for my birthday yesterday. Why can't I learn not to be greedy ... ? > but just to bring a smile to your face: I had a stroppy note from a > parent saying their child didn't understand their homework and without a > textbook they were unable to help him. Please would I supply the > information and they will go through it with him. > The subject?... Sex education :) Perhaps you should! Hmm. Do you teach that subject, Malcolm? <flutters eyelashes> Mary >Well done. Go up one and give the rubbers out. Mary!! >> Gee, I just love Parent's >> Evenings, I'm just so good at them </sarc> > >I bet you are. You smarmy git. Whoopee, it's over until tomorrow (wishing my life away). Blunt and brusque are the main complaints which are relayed to me after Parent's Evenings. >> but just to bring a smile to your face: I had a stroppy note from a >> parent saying their child didn't understand their homework and without a [quoted text clipped - 5 lines] > >Hmm. Do you teach that subject, Malcolm? Yes, to all ages now: I've just written her a letter explaining the basics that she should know for her son's homework. He is only 12. SignatureMalcolm >>Well done. Go up one and give the rubbers out. > > Mary!! It's what teachers used to say before condoms were invented. >>> Gee, I just love Parent's >>> Evenings, I'm just so good at them </sarc> >> >>I bet you are. You smarmy git. > Whoopee, it's over until tomorrow (wishing my life away). DON'T DO THAT! > Blunt and brusque are the main complaints which are relayed to me after > Parent's Evenings. I consider those to be compliments. I'm proud of you. >>> but just to bring a smile to your face: I had a stroppy note from a >>> parent saying their child didn't understand their homework and without a [quoted text clipped - 8 lines] > Yes, to all ages now: I've just written her a letter explaining the > basics that she should know for her son's homework. LOL! Ahem. Can you teach me? Mary Mary Fisher, G.Ross and Malcolm brought up the issue of using the anonymous name "boardmember", which I will attempt to address: If I were using the Internet 10 years ago, when the Internet was similar to a small neighbourhood, I would have no problem sharing my name with the readers of this group. Unfortunately, the Internet has evolved from a "neighborhoud" to the equivalent of a Big Bad City. Tools that are available nowadays, such as Google, although indispensable for searches, are being used to build "profiles" of people by anyone with access to the Internet. Therefore, if I wanted my present or future employers, for instance, out of my personal life, I would not be able to do that. A simple "Googling" of my name will bring up my conversations on this forum, for example, and any other interests I may have (say...uhhh...poultry farming for instance). I do not want to relinquish control over my personal information, to any other entity (Employers, Government, etc.) no matter how benign that information is (and the innocent behaviour of chicken in general) ;-) That said, (WARNING: paternalistic mode ON) I am especially surprised that I have to defend this position on a forum that deals with a very delicate condition such as Epilepsy. Of all people, the denizens of this group should be aware of the stigma attached to this condition. By attaching so much importance to associating posts with actual *names*, the regular active posters may be unintentionally *discouraging* other readers from posting anonymously. Just a thought (paternalistic mode OFF). Still, despite the rough welcome I got ;-) I still believe that this group has a much healthier dynamic than the rest of the Internet. For this, all of the posters should be commended. Respectfully yours, -boardmember Bravo Malcom ! >>PS. netiquette hint, in your response, please trim my text for brevity >>and insert your text where appropriate [quoted text clipped - 25 lines] > > How's that? > First let me start by congratulating the denizens of this group on a > very healthy discussion. I have been lurking for a couple days and [quoted text clipped - 36 lines] > focus is to provide relief for people with epilepsy? (I am looking for > the cast of players) The patient, the families, employers, law enforcement, department of motor vehicles/laws related to motor vehicle use. > b) what do these stakeholders need? PATIENTS AND FAMILIES: Financial assistance particularly for prescriptions or information on programs that already offer financial assistance or provide free products, etc. Some people can't get health insurance; need information at least on which companies accept us. Most folks with epilepsy are not eligible for disability benefits. LAW ENFORCEMENT: Education. How to recognize, how to offer appropriate assistance. DEPARTMENT OF MOTOR VEHICLES: Many laws are very old and do not reflect improvement in medical care or the wide range of medications currently available. In my state, all epilepsy is lumped under one heading. There is no differentiation between types of epilepsy. Today, I think some of the denial of driving privileges are just way too long for some people. TRANSPORTATION: For adults, can be a big problem trying to find ways to get to work or school, get to doctor's appointments, get groceries, etc. Many locations do not have public transportation period. EMPLOYERS: Training on disability laws, first aid. Lots of possibilities here. THE UNDIAGNOSED: I suspect there are a lot of folks walking around with some of the types of epilepsy that don't show blatant observable symptoms. I'm talking about some of the homeless, some of the people who have been given a 'bad behavior' tag, maybe some drug users who try to alleviate symptoms, and so on. I don't have the faintest idea how to reach those people (assuming most of them don't even know they have epilepsy), and that task itself would just be overwhelming. > c) how can we meet those needs? > d) what are appropriate sources of funding other that the usual > suspects (government, members, etc.)? Heath insurance companies, medical centers, drug manufacturers, businesses, alliances with other non-profit groups, etc. You could share resources with other groups, ask for freebies particularly when it comes to advertising, etc. Sometimes you don't need just funding but services. For example, you may be able to get someone to donate printing services, or maybe someone would allow you to use their bulk mail permit to save on postage expense. Lots of options for you there. Barb > As fellow cyberdenizens, would I be able to tap your first-hand > experiences? I sure do hope so! [quoted text clipped - 5 lines] > PS. netiquette hint, in your response, please trim my text for brevity > and insert your text where appropriate [...] > > a) what are the typical stakeholders for an organization whose whole > > focus is to provide relief for people with epilepsy? (I am looking for > > the cast of players) > > The patient, the families, employers, law enforcement, department of > motor vehicles/laws related to motor vehicle use. These are very valid stakeholders Barb. The Dept. of Motor Vehicles, or its equivalent in Canada in my case, is something I haven't thought of! > > b) what do these stakeholders need? > > PATIENTS AND FAMILIES: Financial assistance particularly for > prescriptions or information on programs that already offer financial > assistance or provide free products, etc. Some people can't get health > insurance; need information at least on which companies accept us. Most > folks with epilepsy are not eligible for disability benefits. This is definitely a concern. In Canada, healthcare is free so we are definitely lucky in this respect. > LAW ENFORCEMENT: Education. How to recognize, how to offer appropriate > assistance. Do other readers agree that law enforcement personnel may need training on this subject? > DEPARTMENT OF MOTOR VEHICLES: Many laws are very old and do not reflect > improvement in medical care or the wide range of medications currently > available. In my state, all epilepsy is lumped under one heading. > There is no differentiation between types of epilepsy. Today, I think > some of the denial of driving privileges are just way too long for some > people. I need to bring myself up to date on Canadian laws regarding driving privileges for people with epilepsy. Thanks for bringing this one up. > TRANSPORTATION: For adults, can be a big problem trying to find ways to > get to work or school, get to doctor's appointments, get groceries, etc. > Many locations do not have public transportation period. Right, mobility seems to be highly impaired. I wonder if our organization can form partnerships with other organizations that provide transportation for the disabled e.g. Meals on Wheels, Wheeltrans in the Greater Toronto Area, etc... Q: what kind of partnerships can the readers think of? > EMPLOYERS: Training on disability laws, first aid. Lots of > possibilities here. We do that. However, I wonder how can our organization provide this training proactively, before an incident occurs? That is, to avoid the typical HR tendency to provide support after the fact. [...] > > d) what are appropriate sources of funding other that the usual > > suspects (government, members, etc.)? [quoted text clipped - 3 lines] > share resources with other groups, ask for freebies particularly when it > comes to advertising, etc. Sometimes you don't need just funding but > services. For example, you may be able to get someone to donate > printing services, or maybe someone would allow you to use their bulk > mail permit to save on postage expense. Lots of options for you there. > > Barb Great suggestions Barb. The pharmaceutical companies are definitely on my radar screen. On the other hand, the Health Insurance industry in the traditional sense is non-existent in Canada (a big sigh of relief). Now a question to all: Q: Are there other industries that may be interested in Epilepsy, even remotely? Thanks again Barb for your thorough response, -boardmember Caution, Longgg note, some of these grow by themselves, it seems ... > [...] >> > a) what are the typical stakeholders for an organization whose [quoted text clipped - 20 lines] > This is definitely a concern. In Canada, healthcare is free so we are > definitely lucky in this respect. *** The "Disability" deduction at tax time for "Organic Brain Syndrome" if it applied wrt. Epilepsy was quietly Pulled from Tax Deductions 10? years ago by Paul Martin to Balance his Budget. *Zero sounds from E. Associations, Seniors Groups who might have been affected (people listed as Disabled but between 50 and 65), or other groups. An Extra $1200. New Taxes/person formerly classed that way to Federal Govt. to Balance Budgets or spend on provinces who want to leave. // >> LAW ENFORCEMENT: Education. How to recognize, how to offer > appropriate >> assistance. > > Do other readers agree that law enforcement personnel may need training > on this subject? **** They did in 1998, and Toronto Ep. didn't have Squat. I went to Court on my own and got a case thrown out. There's not a Single Lawyer in Toronto (2 MM People) who has Seizures? >> DEPARTMENT OF MOTOR VEHICLES: Many laws are very old and do not > reflect [quoted text clipped - 9 lines] > I need to bring myself up to date on Canadian laws regarding driving > privileges for people with epilepsy. Thanks for bringing this one up. *** See, reason some of us were so 'crabby' on the weekend. That should be No. 1 of stuff you'd be aware of at the *start Before you went to the internet. Don't they have ANY Support people still on staff where ever you are? This stuff was 'there' in 1993 when I was first diagnosed. G./ >> TRANSPORTATION: For adults, can be a big problem trying to find ways to >> get to work or school, get to doctor's appointments, get groceries, etc. [quoted text clipped - 4 lines] > provide transportation for the disabled e.g. Meals on Wheels, > Wheeltrans in the Greater Toronto Area, etc... *** There was a Homecare Program (I worked at as volunteer) in 1980. It was likely cancelled by Mike Harris (Premier ) during his "Common Sense Revolution".. Stop Laughing. He called it that and people put him **Back in Office, and he Closed MORE Health supports, mostly for Seniors. *** WHY Don't you get a DISCOUNT on the *2 bucks a Trip rides on TTC (subway/buses)? I live 1 mile North of Toronto boundary. I go 'Downtown' about twice a year. It's not worth the Wait for the buses, plus the $9. round trips (2 Bus Services x $2.25 each time one way), when I get what I need (for now) outside the Core of the town. Now that Toronto Ep. has moved to some **Other 'remote' (compared to Yonge and St.Clair) place on your Last Office Move, I won't be There again. That's almost 2 hours *1-way from where I live (above Steeles Ave. fyi). I don't plan to spend 4 hours each way to get at whatever resource you have. Better get THOSE PUT ONLINE, or Partner with Other sites (Health Groups or Libraries) where people can get **Books etc. Outside of Downtown Toronto, or **Next Feb. a bunch of us **Donors will start to Drop Off your Radar too... G. / > Q: what kind of partnerships can the readers think of? > [quoted text clipped - 4 lines] > training proactively, before an incident occurs? That is, to avoid the > typical HR tendency to provide support after the fact. ***G.** Didn't have access to Legal People when *I needed it in 1998. Neither Toronto Police nor Law offices know what to do during or after a seizure. That includes GO (Gov.t of Ontario Buses), Markham and TTC Drivers (Toronto Subway and Bus Systems). *I'd be surprised if **10% of them knew what to do during a seizure or heart attack. They didn't (above) in 1998. / > [...] >> > d) what are appropriate sources of funding other that the usual [quoted text clipped - 12 lines] > my radar screen. On the other hand, the Health Insurance industry in > the traditional sense is non-existent in Canada (a big sigh of relief). ************************************** > Now a question to all: ****G.*** What do you mean by Above? Health Insurance is non-existent.? Which Canada is that?? My Hospital Care, Neurologist and Family Dr. are all Paid for by my Living in Ontario. Do you mean the For-Profit agencies that are Trying to get in, like in Alberta? I can see my Family Dr. within 24 hours, and likely my Neuro within 2-3 days if I needed to (the latter worked at *3 hospitals last I saw him in ~1998). My Employer-provided Insurance (some *don't get) Pays **80% of my Pill Costs each year, which then becomes Taxable at Tax time. But it's Still Paid at the Checkout stand. Some people don't get That and could use Discounts on the high Pill costs, via pharmacies close to where they live (ie Government usually?). Toronto Ep. Organization published "Prescription **Filling Differences in Costs" that were a variable among about 5 Drugstore chains (from $10 to $16? per *prescription bottle). Pill Prices here are set by the Government and the Manufacturers before the pills arrive at the Drugstore? // > Q: Are there other industries that may be interested in Epilepsy, even > remotely? **** Possibly in the U.S. Ontario has Cut Training **Residency Spots for **Neuros *consistently over the Past 10 years. When us 'olde timers' start to need them in next 5 years, they'll be in the U.S. since they couldn't get Residency Spots in Canada and had to go to U.S. to finish their Training and Degrees. ONCE THERE, they are working for (U.S.) Cash, and have no incentive to return. ** You should KNOW THAT too, if Toronto Ep. still had a Neuro on their Staff. // > Thanks again Barb for your thorough response, > -boardmember > Caution, Longgg note, some of these grow by themselves, it seems ... [...] Thank you G.Ross for your insight. Posts like yours best describe what I mean by "learning about epilepsy feels like drinking from a firehose" ;-) The material I am gathering in your posts and others' on this forum is invaluable. Best regards, -boardmember > [...] > [quoted text clipped - 120 lines] > > -boardmember What are the goals of your organization? Any profit or nonprofit organization will want to know your plans before they contribute money or resources. I didn't realize you were in Canada. The needs for the region you want to service might be completely different than other regions, other parts of the world. Remember to add health and social services to your contact list. Barb [...] > What are the goals of your organization? Any profit or nonprofit > organization will want to know your plans before they contribute money > or resources. It's a catch-22 Barb, isn't it. The founders of this organization (many years ago) started with lofty goals (provide support, information, advocacy, research, etc.) As an organization matures, these goals start to be interpreted differently depending on who is "running the show". My goal is to reinvigorate the organization by going to the client directly and asking him/her: "which show do you want to be part of"? That is, instead of top-down program design, some sort of grassroot design. I am not necessarily sure we will look like your "typical" epilepsy support organanization, but at least our constituents (and donors) would be getting the most bang for the buck. > I didn't realize you were in Canada. The needs for the region you want > to service might be completely different than other regions, other parts [quoted text clipped - 3 lines] > > Barb Very true. Canada, and the Greater Toronto Area in particular (http://en.wikipedia.org/wiki/Greater_Toronto_Area) offers unique challenges. The ethnic diversity of the population, for example, is astounding. That's one reason I am looking for a common denominator (my question to this group for example) to use as a starting point. Organizations nowadays definitely cannot afford to be everything to everyone, no matter how comforting that thought is. Thanks again for your input Barb. -boardmember Boardmember, If you are newly involved with Epilepsy Support in Canada, then perhaps the first stop would be in talking with members of the CEA. I am going to assume that you are affiliated with Epilepsy Ontario, from your mention of being a small region there. The Canadian Epilepsy Alliance has extensive resources, and support assistance for any of the epilepsy offices across the country. All you need do is ask. On the website itself are links to most of the offices. You can see them at www.epilepsymatters.com. We are not a business either. The CEA is an association of the charitable epilepsy associations in canada. We benefit from the shared experiences that come with helping people with epilepsy and their families for many years. If you would like more information on this, or would like some assistance in trying to find some direction for your office with regards to providing epilepsy support and assistance, feel free to contact me directly at my email listed below. Pamela Anstey Information Coordinator Epilepsy Newfoundland and Labrador epilepsy@nf.aibn.com (709) 722-0502 or 1-866-EPILEPSY Visit our website at http://www.nfld.net/epilepsy/ > [...] > [quoted text clipped - 42 lines] > > -boardmember > Boardmember, > [...] Thank you Pamela for your invitation. I will be in touch with you shortly. As an offshoot of this topic, would you (or any other person on this forum) be able to describe the perceived need from a provider's perspective? By that I mean: Q1: What are the most popular services/programs for a typical nonprofit epilepsy support organization? (e.g. are there any surveys/polls in this field done by providers) Q2: How do we measure success for these programs? (e.g. are there any outcome measurement studies that gauge whether organizations are having the desired impact) Looking forward to discuss these if possible... Best regards, -boardmember "boardmember" <usenet@mycybernet.net> wrote in message You still smell like a troll. There's allot of 'Charities' out there that turn very little money over to the group of people they are suppose to be helping. The rest of us coughed up a name in this group, so if your not a boiler room scam why can't you say your name ? Tinker yes, that's my real name
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