Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 I think it's something that would be beneficial for all of us with CML. It's something that I thought about doing but never got passed the thinking about it stage. There is a wealth of information out there that people don't always know about that a seminar could help make known to people with CML. There are several things held on a yearly basis but I don't know if there is one strictly regarding CML. I went to a cure magazine seminar back in November in San Diego but it was for all blood cancers. Something just regarding CML would be great! There are several airlines that provide free airfare for cancer patients. I am not sure if everyone knows that. Southwest airlines will provide medical related transportation once yearly for free. I just did that to fly from Las Vegas to Portland Oregon to see my Oncologist. It was very easy to book. Sponsors would be easy to get, I would think CML doctors would be easy to get as well. I think its worth doing but I am just one person a mist a big group of people. Those are just my thoughts. I'd be wiling to help how I could. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Thanks for responding . I had no idea about the airlines that provide free flights for cancer patients. There is one hurdle gone! If there is enough interest out there, there is a good chance that we will be able to combine our efforts to turn this into a reality. Have a great weekend, Iris On 1/5/07, vegasrnjen@... <vegasrnjen@...> wrote: > > I think it's something that would be beneficial for all of us with CML. > It's something that I thought about doing but never got passed the > thinking > about it stage. > There is a wealth of information out there that people don't always know > about that a seminar could help make known to people with CML. There are > several > things held on a yearly basis but I don't know if there is one strictly > regarding CML. I went to a cure magazine seminar back in November in San > Diego > but it was for all blood cancers. Something just regarding CML would be > great! > > There are several airlines that provide free airfare for cancer patients. > I > am not sure if everyone knows that. Southwest airlines will provide > medical > related transportation once yearly for free. I just did that to fly from > Las Vegas to Portland Oregon to see my Oncologist. It was very easy to > book. > > Sponsors would be easy to get, I would think CML doctors would be easy to > get as well. I think its worth doing but I am just one person a mist a big > > group of people. Those are just my thoughts. > > I'd be wiling to help how I could. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 I think this would be a great idea. From what I've read, CML is considered rare and the numbers world-wide were small compared to other types of cancer. I would love to help also. I have a business doing digital transfers, so I could contribute a lot of things in that area as well as get some of my associates that do similar things to contribute. I was thinking the other day about making something similar to the breast cancer magnets, etc just for CML. I live in the Atlanta area. Barbara Dx July 06 _____ From: [mailto: ] On Behalf Of vegasrnjen@... Sent: Saturday, January 06, 2007 12:34 AM Subject: Re: [ ] CML Convention I think it's something that would be beneficial for all of us with CML. It's something that I thought about doing but never got passed the thinking about it stage. There is a wealth of information out there that people don't always know about that a seminar could help make known to people with CML. There are several things held on a yearly basis but I don't know if there is one strictly regarding CML. I went to a cure magazine seminar back in November in San Diego but it was for all blood cancers. Something just regarding CML would be great! There are several airlines that provide free airfare for cancer patients. I am not sure if everyone knows that. Southwest airlines will provide medical related transportation once yearly for free. I just did that to fly from Las Vegas to Portland Oregon to see my Oncologist. It was very easy to book. Sponsors would be easy to get, I would think CML doctors would be easy to get as well. I think its worth doing but I am just one person a mist a big group of people. Those are just my thoughts. I'd be wiling to help how I could. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 We do have this sort of group in Canada-the CML society. There are meetings at least a couple times a year and we meet and there have been different speakers-the last one in September was Dr Giles from MD . This is in Ontario-not sure what or if they do this in the other provinces. Cheryl-Anne S who leads the group would be the best one to contact about infor for this- www.cmlsociety.org is their website -- In , " Iris Colyn " <iris.colyn@...> wrote: > > > > > Dear friends, > > > > My name is Iris and I live in Vancouver, Canada. My twin sister Ilana > > lives in South Africa and was diagnosed with CML last month. > > > > Since then, I have been reading and investigating every bit of information > > I could find on CML and while corresponding with a CML patient in the US, I > > had an idea that I would like to run by the group. > > > > The activity in this support group serves to prove how important it is for > > CML patients and their families to interact with each other. There is so > > much that we keep learning from one another and besides, we draw strength > > and courage from hearing each others' stories. > > > > What do you think about the idea of holding an annual or bi- annual CML > > convention, each time in a different venue? > > > > The convention would comprise lectures by top experts in the field who > > would share the latest research and where it is leading, provide us with > > statistics and latest treatment options. In addition, supporting natural > > treatments could be demonstrated and pharmaceutical companies could > > advertise (after getting the green light from experts) some drugs that help, > > say, with side effects. > > > > I am thinking that we could all use our connections and come up with a way > > to finance such a convention-be it through sponsored airfare, minimal (if > > any) hotel costs or accommodation by local families, free outings (there has > > to be an element of fun too!) and meals etc. > > > > In return for sponsoring the event, participants could provide information > > to researchers, universities, pharmaceutical companies etc. The information > > they can gather from participants could prove invaluable to their research > > and subsequent new treatment. > > > > I would love to hear your thoughts. > > > > Wishing everyone a wonderful weekend and looking forward to hearing your > > comments and ideas, > > > > Iris > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 What if the list owner set up a file for everyone on this board to post their first name, last initial and location? Wouldn't we need to get a feel for the location to determine the most central place for a convention? Does the one in Canada support all of Canada or just one Province? Barbara (Atlanta, GA) Dx Jul 06 _____ From: [mailto: ] On Behalf Of mm6nascar1 Sent: Saturday, January 06, 2007 10:18 AM Subject: [ ] Re: CML Convention We do have this sort of group in Canada-the CML society. There are meetings at least a couple times a year and we meet and there have been different speakers-the last one in September was Dr Giles from MD . This is in Ontario-not sure what or if they do this in the other provinces. Cheryl-Anne S who leads the group would be the best one to contact about infor for this- www.cmlsociety.org is their website -- In groups (DOT) <mailto:%40> com, " Iris Colyn " <iris.colyn@...> wrote: > > > > > Dear friends, > > > > My name is Iris and I live in Vancouver, Canada. My twin sister Ilana > > lives in South Africa and was diagnosed with CML last month. > > > > Since then, I have been reading and investigating every bit of information > > I could find on CML and while corresponding with a CML patient in the US, I > > had an idea that I would like to run by the group. > > > > The activity in this support group serves to prove how important it is for > > CML patients and their families to interact with each other. There is so > > much that we keep learning from one another and besides, we draw strength > > and courage from hearing each others' stories. > > > > What do you think about the idea of holding an annual or bi- annual CML > > convention, each time in a different venue? > > > > The convention would comprise lectures by top experts in the field who > > would share the latest research and where it is leading, provide us with > > statistics and latest treatment options. In addition, supporting natural > > treatments could be demonstrated and pharmaceutical companies could > > advertise (after getting the green light from experts) some drugs that help, > > say, with side effects. > > > > I am thinking that we could all use our connections and come up with a way > > to finance such a convention-be it through sponsored airfare, minimal (if > > any) hotel costs or accommodation by local families, free outings (there has > > to be an element of fun too!) and meals etc. > > > > In return for sponsoring the event, participants could provide information > > to researchers, universities, pharmaceutical companies etc. The information > > they can gather from participants could prove invaluable to their research > > and subsequent new treatment. > > > > I would love to hear your thoughts. > > > > Wishing everyone a wonderful weekend and looking forward to hearing your > > comments and ideas, > > > > Iris > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Hi Barbara, Thanks for your response and willingness to assist. I have also had a comment from another person who suggested that we may want to look at organizing a social get-together for people to meet, chat with one another and have some fun (no doctors etc). I plan to speak to him and learn from his experience. If we decide to go ahead with this, then with all of your inputs we can design a gathering that will be most beneficial to everyone! Have a great weekend, Iris On 1/6/07, barbara <barb521@...> wrote: > > I think this would be a great idea. From what I've read, CML is > considered > rare and the numbers world-wide were small compared to other types of > cancer. I would love to help also. I have a business doing digital > transfers, so I could contribute a lot of things in that area as well as > get > some of my associates that do similar things to contribute. I was thinking > the other day about making something similar to the breast cancer magnets, > > etc just for CML. I live in the Atlanta area. > > Barbara > > Dx July 06 > > _____ > > From: <%40> [mailto: > <%40>] On Behalf Of > vegasrnjen@... <vegasrnjen%40aol.com> > Sent: Saturday, January 06, 2007 12:34 AM > <%40> > Subject: Re: [ ] CML Convention > > I think it's something that would be beneficial for all of us with CML. > It's something that I thought about doing but never got passed the > thinking > about it stage. > There is a wealth of information out there that people don't always know > about that a seminar could help make known to people with CML. There are > several > things held on a yearly basis but I don't know if there is one strictly > regarding CML. I went to a cure magazine seminar back in November in San > Diego > but it was for all blood cancers. Something just regarding CML would be > great! > > There are several airlines that provide free airfare for cancer patients. > I > am not sure if everyone knows that. Southwest airlines will provide > medical > related transportation once yearly for free. I just did that to fly from > Las Vegas to Portland Oregon to see my Oncologist. It was very easy to > book. > > Sponsors would be easy to get, I would think CML doctors would be easy to > get as well. I think its worth doing but I am just one person a mist a big > > group of people. Those are just my thoughts. > > I'd be wiling to help how I could. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Hey Iris! Great idea! I am a conference organiser by trade so would be very willing to assist in any way. I live in South Africa too. Whereabouts is your sister? I am in Cape Town. Wouldn't it be great to bring all the CMLers to Stunning South Africa for the conference? We could do with some new thinking about CML in Africa. Most docs still punting BMT as the main attack. Imagine it people....sun, sea, mountains, wild life and CML! Oh well...the best place would obviously be where the most people could make it for the least amount of money. Maybe Novartis would sponsor? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Hey Iris! Great idea! I am a conference organiser by trade so would be very willing to assist in any way. I live in South Africa too. Whereabouts is your sister? I am in Cape Town. Wouldn't it be great to bring all the CMLers to Stunning South Africa for the conference? We could do with some new thinking about CML in Africa. Most docs still punting BMT as the main attack. Imagine it people....sun, sea, mountains, wild life and CML! Oh well...the best place would obviously be where the most people could make it for the least amount of money. Maybe Novartis would sponsor? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Hi there (I didn't get your name....), My sister is in Morningside, Johannesburg. How wonderful that you are a conference organiser! If we do go ahead with this, we would rely on your expertise and experience! South Africa is far for most people but then it would make sense from a value point of view-the rate of exchange makes it a cheaper destination for people coming from Europe and North America, not to mention the beauty of the place and the many fun activities. Iris On 1/6/07, regentmahogany <merlinh@...> wrote: > > Hey Iris! > > Great idea! I am a conference organiser by trade so would be very > willing to assist in any way. > > I live in South Africa too. Whereabouts is your sister? I am in Cape > Town. > > Wouldn't it be great to bring all the CMLers to Stunning South Africa > for the conference? We could do with some new thinking about CML in > Africa. Most docs still punting BMT as the main attack. > > Imagine it people....sun, sea, mountains, wild life and CML! > > Oh well...the best place would obviously be where the most people could > make it for the least amount of money. Maybe Novartis would sponsor? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2007 Report Share Posted January 7, 2007 Iris -- Sounds great. Kathy dx 5/03 Cape Cod, MA > > > > > Dear friends, > > > > My name is Iris and I live in Vancouver, Canada. My twin sister Ilana > > lives in South Africa and was diagnosed with CML last month. > > > > Since then, I have been reading and investigating every bit of information > > I could find on CML and while corresponding with a CML patient in the US, I > > had an idea that I would like to run by the group. > > > > The activity in this support group serves to prove how important it is for > > CML patients and their families to interact with each other. There is so > > much that we keep learning from one another and besides, we draw strength > > and courage from hearing each others' stories. > > > > What do you think about the idea of holding an annual or bi- annual CML > > convention, each time in a different venue? > > > > The convention would comprise lectures by top experts in the field who > > would share the latest research and where it is leading, provide us with > > statistics and latest treatment options. In addition, supporting natural > > treatments could be demonstrated and pharmaceutical companies could > > advertise (after getting the green light from experts) some drugs that help, > > say, with side effects. > > > > I am thinking that we could all use our connections and come up with a way > > to finance such a convention-be it through sponsored airfare, minimal (if > > any) hotel costs or accommodation by local families, free outings (there has > > to be an element of fun too!) and meals etc. > > > > In return for sponsoring the event, participants could provide information > > to researchers, universities, pharmaceutical companies etc. The information > > they can gather from participants could prove invaluable to their research > > and subsequent new treatment. > > > > I would love to hear your thoughts. > > > > Wishing everyone a wonderful weekend and looking forward to hearing your > > comments and ideas, > > > > Iris > > > > > Quote Link to comment Share on other sites More sharing options...
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