posted
What if we were to start thinking about how to help fund indigent adult Lyme/co patients, since there is so much suffering for those who can't afford care or even to get to an LLMD?
I know, this is a tall order, being that we're asking the kind of money that would normally be paid and should be paid by insurance companies for medical care.
But we don't have that. Yet.
So, what about any creative ideas? Maybe we could start sparking some ideas.
A small group of us in CA have started having this conversation, about the possibility of starting a nonprofit for this purpose, since there are two for kids but none for adults. And how would we fund it?! Is the 10 million dollar question!!
Posts: 13116 | From San Francisco | Registered: May 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Robin,
Thought the very same thing. Always dream of winning the lottery and doing that
You KNOW what they call the lottery tho???
Tax on the stupid!!
Wish I could win it and fund the needy.
Course first step is to buy a ticket,,,and I dont.
Still time to change my ways I spose
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Ok, 1st idea of the day - thx to Don - we buy lottery tickets! Sounds as good as anything! Proceeds to be shared with the nonprofit! Hopefully it's a big pot, but we'll take anything!
Can you just see the grants to recipients: ha, it's your lucky day, you've just won the lottery!
Yeah, are you in touch with troutscout at all, Lymetoo?
I think if we put our collective heads and hearts together, not to mention wallets, we could come up with some ideas.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
No one has to wait for a foundation to be started in order to help.
I have found that simply "sponsoring" the first appt gets many over a tremendous hurdle with that high initial appt cost and the ambivilance and doubt that come prior to that first appt when you are choosing between groceries and what could possibly be a quack (so says everyone around them).
Once they see how thorough the Llmd is and get a diagnosis, the rest is downhill.
Everyone knows 1 person who is sick as a dog but is waffling because of the cost. "Sponsor" that person. Use the term "sponsor" because it maintains their dignity in this horrid situation.
Each 1 Reach 1
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droid1226
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posted
Maybe crowdsourcing. There's hundreds of sites but really only 5 or 10 set up for this exact thing. It's not a gofundme.com acct although that may work too.
For anyone that doesn't know, crowdsourcing is a way to reach out to millions of people to collect small to large amounts from individuals to achieve a financial goal. Basically online fundraising. Most is done for venture ideas where the donors receive part of the profit if it's a company, but not all. There's a lot of charity ones.
It's very possible. It's almost like writing a grant proposal though. It should be extremely well thought out and communicated to the potential donors. Between all of us, we could do it.
Obviously there has to be an executor to watch over and distribute the funds.
posted
A.G. - thanks for your sponsoring suggestion. I have experienced this personally! And am grateful. So, just reiterating - it means a lot to the person being helped to get started, and I would think the person or persons helping would feel good about offering that help and hope to someone. So if you're in a position to help someone, please do!
Droid, any particular crowdsourcing sites you're aware of that are good to use?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Why not start here by asking people who need help to contact the fund? If it gets big, you'll need administrators to run it who normally don't work for free.
"Charity" has become so red-taped that the only people who benefit are those that run them. Few down on the totem pole ever see help.
I'm starting to believe that grass roots support is best way to go..help a neighbor or family you hear of that is in trouble.
Unfortunately, the ones who need it the most don't ask.....pride. The ones who sign up to need it often know about where to go already for help.
Not sure of the answer, but I like A.G.'s answer. Personal one on one support has a bigger return. But that's just me, one of those who never asks for help...I make due even though there isn't much and it's dwindling to where I have no where to turn.
Posts: 867 | From PA | Registered: Jan 2006
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posted
All ideas are good, including personal sponsoring. I think this could go big, if people learn that there may be a place to go to for funds.
That's why I'd like to learn more about possible options, from a crowdfunding site to maybe creating a nonprofit that either would have a national headquarters or lots of chapters that each area would fundraise for.
More ideas, examples of helping fund health needs?
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droid1226
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posted
I think one on one would be best, yes. But seems very slow, if it even happens. Maybe it could...Idk
Indiegogo would probably be the best option Robin, but there's a bunch. I only say them because I've worked with them before and they fit the criteria. They take 4% and then 9% if goal isn't reached
All biz is show biz so if a crowdsourcing campaign is done, it should be like a college thesis. Communicated well to donors, have a direct goal, and the trustees should have some credibility.
Yes, there's red tape in charity and non profit but there almost needs to be for checks and balances. Of course charity and non profits are 2 difft animals. Cle Clinic is a non profit. Hahaha
I'd actually prefer a crowdsourcing to pay for a law firm to lay a class action billion dollar lawsuit at the IDSA's front step. In all honesty, that would catalyze some research & law change....Resulting in getting a bunch of people getting better, quicker. Hah.
It's a good premise and idea. If testing was accurate, we'd be able to move ahead so much quicker in this disease. In every aspect.
posted
What do you all think about the advantages and disadvantages of doing this through crowdsourcing sites that already exist vs starting a nonprofit for funding healthcare for adults with Lyme/co's?
Posts: 13116 | From San Francisco | Registered: May 2006
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droid1226
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posted
No. 1 with a crowdsourcing campaign, absolutely is transparency. If I set up a nonprofit, I have complete control. The website, the finances, the allowances, etc...It also has to be set up as an LLC or an INC. not a DB.
So I could set up a nonprofit business to help lyme patients, show a loss, at the end of the yr but be living on my yacht. Meanwhile, nobody is getting helped in the lyme community, except me. An example of this is The Cancer Fund of America or Kids Wish Network where the children or cancer patients see less than 1% of the donations.
Crowdsourcing is basically "here's all of the money they've got in donations, and here's all they've divvied out with names of donors and donation recipients.
Also, with setting up the company there's a website, logo, etc...all that is more money.
posted
Ok, Droid, let's say we get lots of small contributions to the crowdsourcing site, but then we locate some donors who would like to help out with some really big donations. Do you think they would give to a crowdsourcing site or would they want to give to a nonprofit?
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beaches
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posted
I didn't read all the posts.
Robin, what struck me with what you posted is that contributions to non-profits are tax deductible. Have no idea if that is the case with crowdsourcing. Never even heard of that.
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droid1226
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posted
Yes, there's a form, I think 990...Not sure on that but all contributions to a crowdsourcing are tax exempt.
I think the benefit of starting a large non profit company would be the perceived appeal from large donors.
Like Beaches said, "never heard of that". That would be a tougher task maybe getting the large donors whereas the crowdfunding would probably be a till of directly affected sick people/families.
It's a relatively new way to raise money but it's almost 10 yrs old and is a billion dollar industry.
Say, for instance, Yolanda Foster wanted to donate 10k. I think she would be more apt to give it to a set up non profit, which is sad because even the best non profits only end up giving a fraction of the money to the actual cause.
Like I said though, if the crowdsourcing is done right. Very thorough presentation, well though out, blah, blah....There's no reason that 100% of donations get dispersed.
Pluses and minuses to both.
If you think there's a chance of locating large donors, a non profit would be best imo..
I don't think sick people that want to donate would donate to a company though...Idk why. Just a hunch, I'm wrong a lot. Hah
For instance, when Eva Sapi wanted that atomic microscope, I believe she ran a indiegogo and blew her goal away by a lot.
It would be great for there to be a brainstorm from a lot of people on here. I'm just giving you my ideas but I hope others contribute.
If you started a lymenet Indiegogo, I think you'd get a lot and be able to help a lot of people but it's more like once you reach that one goal it's sorta over. A non profit would always be accepting, constantly.
The more I write, the more I'm changing my mind. I think a non profit business would be best.
Just those are always open to over politicizing, especially the more people who get involved. We aren't immune to that on this forum.
For instance we ran a little fundraiser for a similar thing from our physician's assistant who'd daughter got sick and it turned in to people who donated wanting to get their niece, dad, neighbor to an LLMD. It was successful for the original intent but had to end.
My opionion is that it should be ran and a selected amount should be the same for all applicants. Say it's 500..Then that get's paid directly to the Dr's office. IMO.
Hope other's chime in. This could be big, I agree.
beaches
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Member # 38251
posted
If a non-profit is run efficiently (and ethically) the % of admin costs are reasonable -something like 10% or under if memory serves.
People, especially mega donors IMO are much more likely to donate to a "non profit" as opposed to crowdsourcing or indiegogo.
Non profits also hold annual galas/benefits that are designed to attract the big spenders. 10K is nothing for a celeb to soend at a charity event.
Not sure how helpful this is to the cause, but just throwing out some thoughts in case.
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Tincup
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posted
Love seeing this topic up again. I'm not able to help LOTS of folks with $$, so I just made up this project below, which is helping one person at a time. Small bites (excuse the pun) out of the bigger problem may help lead to bigger ones.
droid1226
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posted
I think most sick people are too proud, embarrassed, or lost. Last winter, I was living in my truck, trying to do enemas, eat right, & treat myself. I was too embarrassed to ask anyone for help but I may have put my name on a list for help if there was one.
Maybe set up their fundraiser page if they can't. Coaches could talk to them or a relative to get their story.
I also think it would be therapeutic for the sick people to help others out.
Guess it goes back to AG's idea.
Here's a great site. I think it's better than indiegogo and is almost just like Robin's idea in her first post.
posted
Nice, TC, that you're helping someone - helps to list the specific costs - I hope people are helping with them -
So, two more good individual sites, the giveforward one and the youcaring one. Just read the youcaring story - wow - one kid with Lyme, 2nd kid with Lyme, 3rd kid with Lyme, 4th kid with Lyme - and they're quadruplets!
So these are all examples of sites that are hopefully working for individuals.
I guess I'd also like to find out the answer as to whether giving to sites like indiegogo or giveforward or youcaring is tax deductible. And maybe not everyone cares if their donation is tax deductible?
If we also go the nonprofit route and get not only lots of small donations but also some big ones, then that could potentially take care of a lot of people.
I must say, I am now working with a small group of talented Californians who want to do something. We recently had a meeting with someone who's had a couple decades of experience running nonprofits.
So please keep the comments and suggestions coming - I am open to hearing it all - and thanks to those of you who are already helping.
May I say, along the way, our little group spoke with a Lyme support group that has already been offering financial and transportation assistance to people in their area, out of the goodness of their hearts. They aren't any more well than anyone else -- they just want to help.
Posts: 13116 | From San Francisco | Registered: May 2006
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randibear
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Member # 11290
posted
what about having a section here where you can jus put your name on it. you won't have to give details but somebody should be able to verify your status.
that way people on here can contact you, determine your needs, and send things to you.
might work.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Kind of like a permanent Green Treatment Santa for Adults. Matching up treatment needs with those who can help.
You give your Wish List. We match it with donors. Ex. I can't buy your full treatment but I can pay for your IV tubing, so and so can pay for the butterfly needles,etc.
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posted
I think that sounds like a Lyme Treatment Registry.
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randibear
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posted
well sort of like say you need vitamins, supplements, feminine stuff like make up shampoo.
you know jus personal items.
anything that might help a little.
sometimes even a gift card.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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droid1226
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posted
When I first started treating, ANYTHING would have helped. It was such a devastating blow when insurance denied coverage. Just a bottle of magnesium or a gas card would have helped. Let alone help paying for the first consults.
I'm so irked about that story about Judah and his family. It's sad the whole family has it, even sadder that they are pouring hundreds of thousands into that detox clinic in Florida(sponaugle)....All he does is dope you up, then you go home and your sick again. Ugh.
That's off subject though. Maybe we start by setting up a Facebook page.
posted
That's a nice idea too - it would be like a year-round Green Santa enterprise. I suppose if people here want to step forward to offer to coordinate it, it could be started. Very similar to what TC is doing for someone.
Maybe we could find another name for it, like, say, Lymelift - then we'd have Lymeliftees and Lymelifters. Ok, I'm being a bit silly!
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randibear
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posted
I think if you jus did one on one here. I've sent care packages to people. jus as sked what they needed and w ent to wally world. one person said gift card so that was easy.
it gives us a chance to interact without becoming some governmental entity or something. if somebody s tarts worrying about taxes and all, then dang it, I question their motives.
I give from my heart and because I genuinely want to help others.
there has to be a way.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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LisaK
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posted
this is a great , and very much needed, idea. I hope and pray that you can make it work
thanks Robin!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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