Guest guest Posted June 30, 2011 Report Share Posted June 30, 2011 You want to find a nonprofit organization whose mission is close to your group to act as a Fiscal Receiver for you. My nonprofit does that, however our mission is solely in the arts. I can direct you to _http://www.fiscalsponsordirectory.org_ (http://www.fiscalsponsordirectory.org) to search their database to find an organization. I can also answer questions about how it works. in Santa Barbara My children are in a local program called 4-H ( I am not sure if they have it in other states) but they can do their own fundraising and since Rare Disease Day is coming up soon I am sure that we can get them to do something. Also the Girl Scouts may be able to help to. ________________________________ From: pletchsr <_pletchsr@..._ (mailto:pletchsr@...) > _achalasia _ (mailto:achalasia ) Sent: Thursday, June 30, 2011 12:11 PM Subject: Re: Foundation EXCITEMENT Hi Everyone, Add your ideas below! Fundraising ideas for Achalasia Foundation (I've been wanting to do this for a while) *Cookbook for achalasics (shakes, mushy foods, best chx noodle soup, etc) *T-shirt sales through CafePress.com (I'll spearhead this if you want - I've been wanting to do this for a while! I have lots of marketing/slogan ideas... add your ideas here! ) *Music Festival - I'm a musician and have been wanting to do a music festival for a cause - would love to put something together in the nations capital to benefit this foundation! Still a year or two off but I'd be up for organizing. I have lots of musician friends. *of course memberships, with different levels of donors, etc. *I want to invent a special achalasia cup with a wide base and a screw on top. Put your coke in there, shake it up, drink the fizzies, repeat. Anybody here have plastics experience? *What about a special achalasia soft drink - like a mint julep, without the alchohol? It would have two things we like - mint and CO2 to relax the sphincter! These are just some of my ideas. I'm a dreamer so some of these things are a bit far-fetched, I know, but if you want any help with any of this kind of stuff, or website, etc. let me know I'm interested! I would recommend going ahead and getting a site up that would take donations - I know it's expensive to start a foundation, and was wondering how that was getting paid for. What is it going to be called? > > The foundation will help with connecting patients with doctors and I hope to get a data base going to help doctors talk with other doctors and pull information from a cenral data point. I hope to have some oranized research started that doctors can all use to help us in the future. This all will tak money so there will be a need for fundraisers and donations. I already have a place that wants to start some research but they need funds or a grant to start it up. >  > > [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2011 Report Share Posted June 30, 2011 Hi Everyone, Add your ideas below! Fundraising ideas for Achalasia Foundation (I've been wanting to do this for a while) *Cookbook for achalasics (shakes, mushy foods, best chx noodle soup, etc) *T-shirt sales through CafePress.com (I'll spearhead this if you want - I've been wanting to do this for a while! I have lots of marketing/slogan ideas... add your ideas here! ) *Music Festival - I'm a musician and have been wanting to do a music festival for a cause - would love to put something together in the nations capital to benefit this foundation! Still a year or two off but I'd be up for organizing. I have lots of musician friends. *of course memberships, with different levels of donors, etc. *I want to invent a special achalasia cup with a wide base and a screw on top. Put your coke in there, shake it up, drink the fizzies, repeat. Anybody here have plastics experience? *What about a special achalasia soft drink - like a mint julep, without the alchohol? It would have two things we like - mint and CO2 to relax the sphincter! These are just some of my ideas. I'm a dreamer so some of these things are a bit far-fetched, I know, but if you want any help with any of this kind of stuff, or website, etc. let me know I'm interested! I would recommend going ahead and getting a site up that would take donations - I know it's expensive to start a foundation, and was wondering how that was getting paid for. What is it going to be called? > > The foundation will help with connecting patients with doctors and I hope to get a data base going to help doctors talk with other doctors and pull information from a cenral data point. I hope to have some oranized research started that doctors can all use to help us in the future. This all will tak money so there will be a need for fundraisers and donations. I already have a place that wants to start some research but they need funds or a grant to start it up. >  > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2011 Report Share Posted June 30, 2011 My children are in a local program called 4-H ( I am not sure if they have it in other states) but they can do their own fundraising and since Rare Disease Day is coming up soon I am sure that we can get them to do something. Also the Girl Scouts may be able to help to. ________________________________ From: pletchsr <pletchsr@...> achalasia Sent: Thursday, June 30, 2011 12:11 PM Subject: Re: Foundation EXCITEMENT  Hi Everyone, Add your ideas below! Fundraising ideas for Achalasia Foundation (I've been wanting to do this for a while) *Cookbook for achalasics (shakes, mushy foods, best chx noodle soup, etc) *T-shirt sales through CafePress.com (I'll spearhead this if you want - I've been wanting to do this for a while! I have lots of marketing/slogan ideas... add your ideas here! ) *Music Festival - I'm a musician and have been wanting to do a music festival for a cause - would love to put something together in the nations capital to benefit this foundation! Still a year or two off but I'd be up for organizing. I have lots of musician friends. *of course memberships, with different levels of donors, etc. *I want to invent a special achalasia cup with a wide base and a screw on top. Put your coke in there, shake it up, drink the fizzies, repeat. Anybody here have plastics experience? *What about a special achalasia soft drink - like a mint julep, without the alchohol? It would have two things we like - mint and CO2 to relax the sphincter! These are just some of my ideas. I'm a dreamer so some of these things are a bit far-fetched, I know, but if you want any help with any of this kind of stuff, or website, etc. let me know I'm interested! I would recommend going ahead and getting a site up that would take donations - I know it's expensive to start a foundation, and was wondering how that was getting paid for. What is it going to be called? > > The foundation will help with connecting patients with doctors and I hope to get a data base going to help doctors talk with other doctors and pull information from a cenral data point. I hope to have some oranized research started that doctors can all use to help us in the future. This all will tak money so there will be a need for fundraisers and donations. I already have a place that wants to start some research but they need funds or a grant to start it up. >  > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2011 Report Share Posted June 30, 2011 Wow...you go girl! From: pletchsr <pletchsr@...> Subject: Re: Foundation EXCITEMENT achalasia Date: Thursday, June 30, 2011, 12:11 PM  Hi Everyone, Add your ideas below! Fundraising ideas for Achalasia Foundation (I've been wanting to do this for a while) *Cookbook for achalasics (shakes, mushy foods, best chx noodle soup, etc) *T-shirt sales through CafePress.com (I'll spearhead this if you want - I've been wanting to do this for a while! I have lots of marketing/slogan ideas... add your ideas here! ) *Music Festival - I'm a musician and have been wanting to do a music festival for a cause - would love to put something together in the nations capital to benefit this foundation! Still a year or two off but I'd be up for organizing. I have lots of musician friends. *of course memberships, with different levels of donors, etc. *I want to invent a special achalasia cup with a wide base and a screw on top. Put your coke in there, shake it up, drink the fizzies, repeat. Anybody here have plastics experience? *What about a special achalasia soft drink - like a mint julep, without the alchohol? It would have two things we like - mint and CO2 to relax the sphincter! These are just some of my ideas. I'm a dreamer so some of these things are a bit far-fetched, I know, but if you want any help with any of this kind of stuff, or website, etc. let me know I'm interested! I would recommend going ahead and getting a site up that would take donations - I know it's expensive to start a foundation, and was wondering how that was getting paid for. What is it going to be called? > > The foundation will help with connecting patients with doctors and I hope to get a data base going to help doctors talk with other doctors and pull information from a cenral data point. I hope to have some oranized research started that doctors can all use to help us in the future. This all will tak money so there will be a need for fundraisers and donations. I already have a place that wants to start some research but they need funds or a grant to start it up. >  > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2011 Report Share Posted July 1, 2011 EEk! The cup gives me the willies! It's so surprising to me that carbonation helps people with achalasia! I've been diagnosed with vigorous achalasia and have HORRIBLE spasm attacks that sometimes cannot be stopped by anything. I haven't had a single carbonated beverage in 2.5 years because that was the only thing I could link to the onset of spasms! Maybe there should be a disclaimer on the cup :-P > > > > The foundation will help with connecting patients with doctors and I hope to get a data base going to help doctors talk with other doctors and pull information from a cenral data point. I hope to have some oranized research started that doctors can all use to help us in the future. This all will tak money so there will be a need for fundraisers and donations. I already have a place that wants to start some research but they need funds or a grant to start it up. > >  > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2011 Report Share Posted July 1, 2011 I would have liked hearing if the last poster (ladawki143) still gets spasms, and the frequency and intensity of them since giving up carbonated beverages 2.5 years ago. I admit that it must have sounded incredibly strange to you, that it is your feeling that your spasms are brought on by carbonated beverages and you read that some people actually drink carbonated beverages to stop them. Must have sounded kinda weird 17 years ago when people started having botox (a well known poison at certain levels) injected into them to eat better. ________________________________ From: ladawki143 <lauramccarty77@...> achalasia Sent: Fri, July 1, 2011 1:01:23 PM Subject: Re: Foundation EXCITEMENT  EEk! The cup gives me the willies! It's so surprising to me that carbonation helps people with achalasia! I've been diagnosed with vigorous achalasia and have HORRIBLE spasm attacks that sometimes cannot be stopped by anything. I haven't had a single carbonated beverage in 2.5 years because that was the only thing I could link to the onset of spasms! Maybe there should be a disclaimer on the cup :-P > > > > The foundation will help with connecting patients with doctors and I hope to >get a data base going to help doctors talk with other doctors and pull >information from a cenral data point. I hope to have some oranized research >started that doctors can all use to help us in the future. This all will tak >money so there will be a need for fundraisers and donations. I already have a >place that wants to start some research but they need funds or a grant to start >it up. > >  > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2011 Report Share Posted July 2, 2011 I do still get the spasms, but I obviously avoid anything that I suspect to trigger them. The carbonation is the only one I know to be a trigger, but there are a lot of other things I suspect to be, so I avoid them if at all possible, and I often (not always) pay the consequences when I don't. If I do everything I think I should (sleep at 30+ degree angle, never let stomach get too empty, drink water immediately upon waking and moving around, etc. etc. ETC.), there is definitely a reduction in frequency and intensity of the pain. > > > > > > The foundation will help with connecting patients with doctors and I hope to > >get a data base going to help doctors talk with other doctors and pull > >information from a cenral data point. I hope to have some oranized research > >started that doctors can all use to help us in the future. This all will tak > >money so there will be a need for fundraisers and donations. I already have a > >place that wants to start some research but they need funds or a grant to start > >it up. > > >  > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2011 Report Share Posted July 3, 2011 carbonation really helps me. very much. isnt that weird how we all are different and yet the same. What difference does it make to the dead, the orphans and the homeless, whether the mad destruction is wrought under the name of totalitarianism or the holy name of liberty or democracy. " -Mahatma Ghandi (1869-1948) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2011 Report Share Posted July 7, 2011 wrote: > > > *Music Festival - I'm a musician and have been wanting to do a music > festival for a cause - would love to put something together in the > nations capital to benefit this foundation! Still a year or two off > but I'd be up for organizing. I have lots of musician friends. > A few years back I heard a radio program that was a fund raiser for a rare disease. It was on a music station and they played music, much like usual, and between sets had short discussions and interviews with patients, doctors, and researchers. I don't remember what disease it was for or any of the details of the music or discussions. I do remember that I thought they had done a good job at it. This would probably require putting together a demo and then offering to either develop it as a complete show or to work with producers of radio stations to use their DJs and formats. I think one would want to keep the music as normal for the station as possible and avoid overly corny use of sad songs and such. For some stations all that would be needed would be the discussions and interviews, the station could supply the music if any. notan Quote Link to comment Share on other sites More sharing options...
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