Guest guest Posted July 20, 2010 Report Share Posted July 20, 2010 Hi , With deep respect and admiration to you, I too have been considering removing myself from this group. I would like to explain. At times, when receiving emails/posts, I feel pressured to donate and perhaps fundraise for this cause. I noted in one of your replies (to Helen) recently you said you were not going to bug anyone to donate, which was the followed by: " But if you want answers that is the only way I see it happening. We need a total of $35,000 to get it. We are around the $5,000 mark. So you see at this rate we are far from finding out the answers we need to treat and cure this nasty and painful disorder. " Is that not a guilt trip for all newcomers to this group? After reading through a lot of posts, it is evident that many are struggling finding a health professional, let alone being able to afford one, I place myself in this category. Of the five people that have pulled out of the group today, have you considered they may be in my position? I joined this group to find support from others, information and some reassurance, yet now I feel guilty regarding your comment today: " Funny, as these people don't have a problem with getting support or asking questions or availing themselves of all the info available on the group site. They want to get help but not to give. " As for donating and fundraising, I live in Australia, with minimal access to specialist treatment, in particular a specialist that is familiar with this disorder. EN is not a well known complaint in my part of the world, so if I were to donate to fund research, I would be more inclined to do so in my own country if I were in fortunate enough to be financially able to. We are all aware how debilitating EN is, and its affects on all aspects of our lives, including our ability to work. I have been unable to work for seven months due to this illness, which has impacted on my financial position to the point of despair. The last thing I need right now is to feel pressured, stressed or guilty for being unable to fund a research project in another country, just to gain what I thought would be support through this group. I am sorry to be so up front in saying what I think, but this may give you answers as to why people pull out of this group from time to time. If you feel you need to remove me from this group because of my response to your post, then do so. Lastly, I don't find it funny, in fact I find it sad. There are other ways to fundraise other than to pressure those who are unwell and vulnerable. Regards Trudi (EN 12 years, Australia) > > Dear Group, > As your moderator I am privy to a lot of " behind the scenes " stuff with regards to the EN Group. I have noticed that time and time again whenever the topic of conversation turns to fund raising for us to get medical research we get some people unsubscribing from the group. Funny, as these people don't have a problem with getting support or asking questions or availing themselves of all the info available on the group site. They want to get help but not to give. So five people dropped out today. Which means we still have 2,495 left. If you can donate, please do, and if you can't then just continue to avail yourself of the group resources. Believe me, no one knows if you donated or not. The only person who knows is YOU. But once you do give, in whatever amount, you will feel so much more connected and a part of a movement that will end in the research that will find an effective treatment or cure for EN. And you will feel pride in having made a difference in the lives of many good people just like yourself. > Love, > > http://poems2order.wordpress.com/donate-to-erythema-nodosum-research/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2010 Report Share Posted July 20, 2010 , So true. I sent a donation of $5.00. This is all I can give now, but if everyone could give what they can, it will make a big difference. Debbie Dear Group,As your moderator I am privy to a lot of " behind the scenes " stuff with regards to the EN Group. I have noticed that time and time again whenever the topic of conversation turns to fund raising for us to get medical research we get some people unsubscribing from the group. Funny, as these people don't have a problem with getting support or asking questions or availing themselves of all the info available on the group site. They want to get help but not to give. So five people dropped out today. Which means we still have 2,495 left. If you can donate, please do, and if you can't then just continue to avail yourself of the group resources. Believe me, no one knows if you donated or not. The only person who knows is YOU. But once you do give, in whatever amount, you will feel so much more connected and a part of a movement that will end in the research that will find an effective treatment or cure for EN. And you will feel pride in having made a difference in the lives of many good people just like yourself. Love,http://poems2order.wordpress.com/donate-to-erythema-nodosum-research/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2010 Report Share Posted July 20, 2010 Hi Trudi,I find it very interesting that you feel more inclined to donate to a cause such as this one in your own country and not ours, because research anywhere in the world is beneficial to everyone in the world. Generally speaking research is published and benefits the rest of the scientific community. Furthermore, if you do not have a fund raising group such as ours in the U.S. then why not donate? Why put a stop to a research that can effect all of our lives in a positive way. Second of all is not asking people to donate mass amounts of money, even $5 will do, just anything you can afford. Trudi, I am sure once the cure is found, whether it be in the U.S. or Europe, or who even cares where, you will hear about it, especially if you stay connected with the Erythema Nodosum groups. And once you find out there is a cure, you will do everything you can to cure your own self of EN. It's all about taking one step at a time, and moving forward once you move beyond each obstacle. This is all in love.All the best to everyone,To: erythema_nodosum_Group Sent: Tue, July 20, 2010 10:29:34 PMSubject: Re: Isn't it funny? Hi , With deep respect and admiration to you, I too have been considering removing myself from this group. I would like to explain. At times, when receiving emails/posts, I feel pressured to donate and perhaps fundraise for this cause. I noted in one of your replies (to Helen) recently you said you were not going to bug anyone to donate, which was the followed by: "But if you want answers that is the only way I see it happening. We need a total of $35,000 to get it. We are around the $5,000 mark. So you see at this rate we are far from finding out the answers we need to treat and cure this nasty and painful disorder." Is that not a guilt trip for all newcomers to this group? After reading through a lot of posts, it is evident that many are struggling finding a health professional, let alone being able to afford one, I place myself in this category. Of the five people that have pulled out of the group today, have you considered they may be in my position? I joined this group to find support from others, information and some reassurance, yet now I feel guilty regarding your comment today: "Funny, as these people don't have a problem with getting support or asking questions or availing themselves of all the info available on the group site. They want to get help but not to give." As for donating and fundraising, I live in Australia, with minimal access to specialist treatment, in particular a specialist that is familiar with this disorder. EN is not a well known complaint in my part of the world, so if I were to donate to fund research, I would be more inclined to do so in my own country if I were in fortunate enough to be financially able to. We are all aware how debilitating EN is, and its affects on all aspects of our lives, including our ability to work. I have been unable to work for seven months due to this illness, which has impacted on my financial position to the point of despair. The last thing I need right now is to feel pressured, stressed or guilty for being unable to fund a research project in another country, just to gain what I thought would be support through this group. I am sorry to be so up front in saying what I think, but this may give you answers as to why people pull out of this group from time to time. If you feel you need to remove me from this group because of my response to your post, then do so. Lastly, I don't find it funny, in fact I find it sad. There are other ways to fundraise other than to pressure those who are unwell and vulnerable. Regards Trudi (EN 12 years, Australia) > > Dear Group, > As your moderator I am privy to a lot of "behind the scenes" stuff with regards to the EN Group. I have noticed that time and time again whenever the topic of conversation turns to fund raising for us to get medical research we get some people unsubscribing from the group. Funny, as these people don't have a problem with getting support or asking questions or availing themselves of all the info available on the group site. They want to get help but not to give. So five people dropped out today. Which means we still have 2,495 left. If you can donate, please do, and if you can't then just continue to avail yourself of the group resources. Believe me, no one knows if you donated or not. The only person who knows is YOU. But once you do give, in whatever amount, you will feel so much more connected and a part of a movement that will end in the research that will find an effective treatment or cure for EN. And you will feel pride in having made a difference in the lives of many good people just like yourself. > Love, > > http://poems2order.wordpress.com/donate-to-erythema-nodosum-research/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2010 Report Share Posted July 20, 2010 Thanks, Debbie! Amen to that! Any amount is getting us closer to the goal!Love,http://poems2order.wordpress.com/Please enter Erythema Nodosum.........Thanks! Dear Group,As your moderator I am privy to a lot of "behind the scenes" stuff with regards to the EN Group. I have noticed that time and time again whenever the topic of conversation turns to fund raising for us to get medical research we get some people unsubscribing from the group. Funny, as these people don't have a problem with getting support or asking questions or availing themselves of all the info available on the group site. They want to get help but not to give. So five people dropped out today. Which means we still have 2,495 left. If you can donate, please do, and if you can't then just continue to avail yourself of the group resources. Believe me, no one knows if you donated or not. The only person who knows is YOU. But once you do give, in whatever amount, you will feel so much more connected and a part of a movement that will end in the research that will find an effective treatment or cure for EN. And you will feel pride in having made a difference in the lives of many good people just like yourself. Love,http://poems2order.wordpress.com/donate-to-erythema-nodosum-research/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2010 Report Share Posted July 20, 2010 , Funny you should send this email. Just this evening, I mentioned to my hubby of my pledge to EN. I told him that there is a summer fundraiser to get this funding going. He knows how much ths effects me, and others. I told him that it is tiring of hearing people complain about their symptoms, and yet the drs. know nothing about EN's causes. It is pretty much a stab in the dark. But many do not appreciate all you have done on your own, that helps each and every one of us. And once WE fund the research, we can take pride in it. We may not be a large group, but together we can make a large impact on EN. I for one, do not feel pressured by you or anyone else to donate. Only by myself. I want to see this funding go through to get the research to end EN. I want to be a part of the founding group to get this research. I know what others have gone through, cause I have been there myself. May not be as bad as others have had it, nor as long. BUT I want to see this go through. I know how much time and research you have put into this. I know the research will help me. I know it will help each and every one of us on here. This is what I call a team effort Together Everyone Achieves More In other words, about $12.50 per person would fund this effort. It is a tax deduction. this amout is not per month or year. It is per person. This is after all the prior donations. The $5.00 each would get us close, but not to the goal line. I understand not all can afford to pay. But please understand, this money is not going to anyone. It is going to a cause that we all know too well about. Many on here have donated more then their fair share of the approx. amount if we are to self fund the research. It is not mandatory that you donate to be part of this group. But won't you please stop and think about being part of the cure? Thank you again for all your dedication you have shown for all of us. Debbie Mclaughlin, No. California, USA To: erythema_nodosum_Group Sent: Tue, July 20, 2010 9:13:04 PMSubject: Re: Isn't it funny? Thanks, Debbie! Amen to that! Any amount is getting us closer to the goal!Love,http://poems2order. wordpress. com/Please enter Erythema Nodosum.........Thanks! Dear Group,As your moderator I am privy to a lot of "behind the scenes" stuff with regards to the EN Group. I have noticed that time and time again whenever the topic of conversation turns to fund raising for us to get medical research we get some people unsubscribing from the group. Funny, as these people don't have a problem with getting support or asking questions or availing themselves of all the info available on the group site. They want to get help but not to give. So five people dropped out today. Which means we still have 2,495 left. If you can donate, please do, and if you can't then just continue to avail yourself of the group resources. Believe me, no one knows if you donated or not. The only person who knows is YOU. But once you do give, in whatever amount, you will feel so much more connected and a part of a movement that will end in the research that will find an effective treatment or cure for EN. And you will feel pride in having made a difference in the lives of many good people just like yourself.Love,http://poems2order. wordpress. com/donate- to-erythema- nodosum-research / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2010 Report Share Posted July 21, 2010 Hi all, I have read all the posts in this thread with great interest, and I fully respect all the expressed points of view. I feel badly that some folks leave the group because of fund raising. Donations are not a requirement to benefit from group membership. If you cannot or do not want to contribute, then don't, and SKIP reading the " donation " threads. DON'T leave the group! Just a reminder - if you ever do searches on your computer, you can use " GoodSearch " and automatically donate to the cause of your choice! If you ever shop from your computer, you can use " GoodShop " to do the same. There is no cost to you for using these tools. A HUGE thank you to all for your group membership, for sharing your pain, your ideas, your trials, your hopes, your successes. To good health, Pat > > Dear Group, > As your moderator I am privy to a lot of " behind the scenes " stuff with regards to the EN Group. I have noticed that time and time again whenever the topic of conversation turns to fund raising for us to get medical research we get some people unsubscribing from the group. Funny, as these people don't have a problem with getting support or asking questions or availing themselves of all the info available on the group site. They want to get help but not to give. So five people dropped out today. Which means we still have 2,495 left. If you can donate, please do, and if you can't then just continue to avail yourself of the group resources. Believe me, no one knows if you donated or not. The only person who knows is YOU. But once you do give, in whatever amount, you will feel so much more connected and a part of a movement that will end in the research that will find an effective treatment or cure for EN. And you will feel pride in having made a difference in the lives of many good people just like yourself. > Love, > > http://poems2order.wordpress.com/donate-to-erythema-nodosum-research/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2010 Report Share Posted July 21, 2010 Thank you Pat. I am not wanting you to feel badly, I feel badly enough for not contributing. I guess I was hoping for understanding, which I feel you do, but more so to explain how it comes across to a new member who is really out on a limb and needing help. I appreciate this post very much, and those who have responded to what I have written. I too, have written from the heart and wish you all good health. Regards Trudi Re: Isn't it funny? Hi all,I have read all the posts in this thread with great interest, and I fully respect all the expressed points of view.I feel badly that some folks leave the group because of fund raising. Donations are not a requirement to benefit from group membership. If you cannot or do not want to contribute, then don't, and SKIP reading the "donation" threads. DON'T leave the group!Just a reminder - if you ever do searches on your computer, you can use "GoodSearch" and automatically donate to the cause of your choice! If you ever shop from your computer, you can use "GoodShop" to do the same. There is no cost to you for using these tools.A HUGE thank you to all for your group membership, for sharing your pain, your ideas, your trials, your hopes, your successes.To good health,Pat>> Dear Group,> As your moderator I am privy to a lot of "behind the scenes" stuff with regards to the EN Group. I have noticed that time and time again whenever the topic of conversation turns to fund raising for us to get medical research we get some people unsubscribing from the group. Funny, as these people don't have a problem with getting support or asking questions or availing themselves of all the info available on the group site. They want to get help but not to give. So five people dropped out today. Which means we still have 2,495 left. If you can donate, please do, and if you can't then just continue to avail yourself of the group resources. Believe me, no one knows if you donated or not. The only person who knows is YOU. But once you do give, in whatever amount, you will feel so much more connected and a part of a movement that will end in the research that will find an effective treatment or cure for EN. And you will feel pride in having made a difference in the lives of many good people just like yourself.> Love,> > http://poems2order.wordpress.com/donate-to-erythema-nodosum-research/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2010 Report Share Posted July 21, 2010 Actually something that occurs to me in respect of Trudi and us other non-USA residents, is whether we can get our tax paid to the charity from our own countries somehow. Any UK accountants on the list who might be able to advise? it is easy to do here, but is there any way to do it internationally? its called Gift Aid in the UK Regards Nina Baker Failing to plan = Planning to fail Subject: Re: Re: Isn't it funny?To: erythema_nodosum_Group Date: Wednesday, 21 July, 2010, 14:19 Thank you Pat. I am not wanting you to feel badly, I feel badly enough for not contributing. I guess I was hoping for understanding, which I feel you do, but more so to explain how it comes across to a new member who is really out on a limb and needing help. I appreciate this post very much, and those who have responded to what I have written. I too, have written from the heart and wish you all good health. Regards Trudi Re: Isn't it funny? Hi all,I have read all the posts in this thread with great interest, and I fully respect all the expressed points of view.I feel badly that some folks leave the group because of fund raising. Donations are not a requirement to benefit from group membership. If you cannot or do not want to contribute, then don't, and SKIP reading the "donation" threads. DON'T leave the group!Just a reminder - if you ever do searches on your computer, you can use "GoodSearch" and automatically donate to the cause of your choice! If you ever shop from your computer, you can use "GoodShop" to do the same. There is no cost to you for using these tools.A HUGE thank you to all for your group membership, for sharing your pain, your ideas, your trials, your hopes, your successes.To good health,Pat>> Dear Group,> As your moderator I am privy to a lot of "behind the scenes" stuff with regards to the EN Group. I have noticed that time and time again whenever the topic of conversation turns to fund raising for us to get medical research we get some people unsubscribing from the group. Funny, as these people don't have a problem with getting support or asking questions or availing themselves of all the info available on the group site. They want to get help but not to give. So five people dropped out today. Which means we still have 2,495 left. If you can donate, please do, and if you can't then just continue to avail yourself of the group resources. Believe me, no one knows if you donated or not. The only person who knows is YOU. But once you do give, in whatever amount, you will feel so much more connected and a part of a movement that will end in the research that will find an effective treatment or cure for EN. And you will feel pride in having made a difference in the lives of many good people just like yourself.> Love,> > http://poems2order.wordpress.com/donate-to-erythema-nodosum-research/> Quote Link to comment Share on other sites More sharing options...
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