Any of you savy Lymies know how to start a non profit support group for treatment??????

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Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 1/18/2009 11:26 AM (GMT -6)   
I want to raise money to help those in need.
Anyone have some tips on how I go about this?
What would be my first steps?
Do I set up a corp. Guess I need a lawyer...hmmm....any one on here do this sort of thing.
I like the idea of being robin hood...I look great in red....lol 
 
I would have to get a whole apartment complex here in AZ for starters...lol...
And get a bulk rate at my clinic lol......
 
all ideas are welcome.....and what about a name????? rolleyes
Marie
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 1/18/2009 8:56 PM (GMT -6)   
Marie,
great question! I want to know this also. I've been thinking that this is the area of work I may need to get into next. ??? I'm a critical care nurse and don't know realistically when I can trust myself to work/ care for critically ill patients again.

It's funny, cause I just read the Bush comments! If I had to stop working as a nurse because of "brain fog", how much more did Bush need to stop working???? wow, that's scary.

anyway, I'm definetly looking forward to others responses. Thanks for putting the question out!
Lisa
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
 


Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/18/2009 9:21 PM (GMT -6)   
I think that would be a great idea Marie!! Have you seen this before? I think this is also a great cause.

http://www.pennies4patients.org/
 
 


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 1/18/2009 10:20 PM (GMT -6)   
RN
I am sure I will get a spanking about the bush comments..lol. But then again....that could be fun.
I would love to have you as my nurse. You would walk in and say...who are you again? And are you here to have brain surgery...oh no...sorry....knee operation you say...oh sorry..where am I ????
And the whole time you would be at the airport...lol
I am so bad.
Ok...so do I have to hire a lawyer to tell me how to start a non profit org. to help all you lymies..???
How about...
http://moniesforlymies.org

no?
Okay....;)
Honestly the org. should not have lyme in it. Becuase people all think that they already know what lyme is....whinny people with bad knees...lol
So it has to sound more serious. And deal with all of the co infections since every stupid tick is carrying a truck load.
Hey....most people have not even heard of "tularema" not that is a whopper.
ok...so....IDSA.org.
Infectous disease support aid???
or how about BSLyme.
kidding.
Ok..it is my bed time...:>)
I will look at pennies 4 patients.




http://
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 1/19/2009 12:25 PM (GMT -6)   
Hey,
Oh sorry that you are not feeling well. I think that you had asked me for coffee...no? Gosh I have been a little busy and now that they have upped my treatment to 6 hours a day. I am sort of a wash afterwards.
I will be at the clinic so much in the next 3 weeks or so....so ask for me...lol
Tell them that I wanted to meet you! You can't miss me. I am the only 6 foot blond girl there. The one with the pink lap top in her lap....bored...lol
I will look at your site. I think that I should not put lyme in the name of my org. But make it "seem" to be something else. More broadened really. And no one on here only has lyme. Right?
Well come on down to the clinic darling...and lets do some iv together..lol
Since I know Lymies do not do lunch....or dinner...gosh I couldn't...:>)
I will tap on you directly and give you my phone number and contact info...other than that..come and find me.
I am there at 8 am to about 2 pm or so. Let me know when you are coming...and I will wash my hair...ha
Best,
Marie
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 1/19/2009 12:26 PM (GMT -6)   
hey I can't tap on your e-mail....so tap on me. so I can give you my # I don't want to post it on here...too many people love me here...:>)
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


ponder 44
New Member


Date Joined Jan 2009
Total Posts : 6
   Posted 1/19/2009 4:24 PM (GMT -6)   
Hi,

I am a member of a non profit site for Lyme called www.dailystrength.org

There are lots of lymies on there, who you can share symptoms and ideas

with ( No, I don't work for dailystrength) it a very good site though.

One lady on there had given both her Daughters Lyme, and is in your

Position.

Hope this helps

Dave

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 1/19/2009 4:29 PM (GMT -6)   
Thanks Dave,
I am looking for info. on how to start a fund raising comp. But now that I think about it...everyone on here feels so bad....and they would not really have the strength or desire to give good bussiness advice..lol
Silly me. I will ask one of my lawyers. duhhh.
My family all got lyme in our garden in Martha's Vineyard. But Lilly may have been born with it too. Not sure. Lost the baby right before her too. In my second trimester. Never knew why. I was in my garden with the deer...so dumb.
Oh well......
But thank you Dave, I will check it out!
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 1/20/2009 12:03 AM (GMT -6)   
Marie,
Contact the facilitators of the foundation established for LymeAid4Kids Fund through the Lyme Disease Association.  If you have a chance to call me, I will give you the attorney's email address who was involved in this process.  Expert on Lyme, battled Lyme, lawyer.  Great combo! for these types of inquiries.  May be able to bridge communications between you and Amy Tan prior to your meeting w/the attorney. 
 
Also, PenniesforPatients was established with the help of PJ Langhoff.  If you need her contact info, let me know.  She could also help point you in the right direction.
 
 
Blessings,
Sojourner

SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/20/2009 5:08 AM (GMT -6)   
MV I really appreciate your compassion and your advocate efforts. Keep up the great work and good luck with the Lymie fund!!

It's good that you can see Mr Bush for who he really is. I am sure we will locate the WDM's someday.. wink

Eric

Post Edited (SickInCT) : 1/20/2009 4:11:49 AM (GMT-7)


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 1/20/2009 12:03 PM (GMT -6)   
Sojourner.
Of course you have all the answers! I should have known! I will give you a call and pick your brain...lol
Or you can e-mail me directly and give me some first steps that I should take..the contracts that you mentioned would be very helpful. Or if one of the other org. want me to come on board to raise money for them I would do that too.
But I really have strong ideas about how I want to go about this already. And I already know where and how my money is going to be spent. And I already have many people that I want to help...lol. met alot of them on here.
Like my poor gal, Diane , living in some hotel, broke,and alone trying to safe her life for the last 5 years. Who cannot afford to come out to Az.
I have some leg work to do. Like finding good prices on apartments in PHX a short drive to Scottsdale. And I mean..2 to 3 mos rent is not a big deal. And maybe some women would be better off put with a roommate...if they are alone.
And then of course treatment for them, where I am now. Because I know it works.
When I went to a Dr. P in FLL . She told me that my treatment would not be covered by insurance and that my abx were going to run me bet. 3 and 5,000 a month for a year and a half. I could not afford that!
And it is too long and just did not feel right to me. And who has the time to be sick for that long....not me.
So my plan is somewhat simple. I know where my money is going. oh and plane tickets to get people here too.
I do not want to move to AZ....ugghhhhh.
But if you have any ideas I would greatly app. them.
You have my e-mail address.
xox
marie
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 1/20/2009 12:33 PM (GMT -6)   
keep hope..ok girl...come and find me!
I am living here. Hooked up! Tuesday- Thursday I am here 8-2 pm...sometimes 3
And Friday is my mineral day and I get out early..like9 or 10
I sent you my cell and rm # so you can give me a call and I will come out with my tree...and give you a hug!
You are lucky that you live here Deb!
And it is great that your Dr. also supports this treatment that I am getting. That should give you some peace of mind.
The supplements are not any more than any health food store.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 1/20/2009 4:15 PM (GMT -6)   
hey deb,
You need to call and make an app. at the clinic. You can't just walk in and get seen. They are very busy. I told them that you were going to some by and they asked for your name. And said that you they did not know about an app. with a Debbie, then they asked me your last name..and I don't even know it..lol
So...If you want t tour and for someone like a Dr. to sit down with you and tell you what they can do for you. You will have to make a app. And I had to make mine 8 working days in advance with the Dr.
M
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."

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