posted
Hi all - this is to float an idea for discussion -
Seeing Green Santa about to get started again for this year -
Witnessing Occupy gatherings springing up all over the country and the world, with people coming together to ask for economic justice and hope -
Being aware that a lot of people come here needing care but many are not able to afford it -
Knowing about two funds for kids, I think - LymeAid4Kids and the Lymelight Foundation -
Therefore...
How about considering creating a fund to help adults and kids who can't pay for care to be able to get some?
These are my ideas so far: create or use a current 501c3 organization that can accept funds, with tax write-off available
that folks, if they have a large sum of money, or a one-time donation they'd like to donate for others' healthcare, can do so,
that folks could consider tithing to - as in a small percentage each month, or a small percentage of what they spend each month on their own healthcare,
so, if someone spends $500 that month on their own healthcare, to tithe a small percentage of that amount, like 10% or whatever, to the fund, so that others who can't afford care can also have some.
Etc for more ideas on money input -? Like any way to invest money to make money? Be able to use the interest?
Then, how to administer - directly to the person, or to the medical provider or service provider? Probably the latter, so that the money goes for care.
And amounts would have to be discussed, as in a little for many people, or more for a smaller number who could then access more of their needed healthcare.
And, if desired, there could be an online listing of the names of those who are contributing, or people could remain anonymous, but I think the anonymouses can be mentioned, so that everyone can see how many are participating in the giving.
Anyway, everyone knows how good it feels to be able to access care and be able to have the opportunity to treat so we can get back to life!
I think there could be a lot of satisfaction in realizing how much those with money could really help others to have their lives back.
So, open for discussion!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Nice idea. Wondering how many people with chronic lyme can afford big enough donations to make a difference. And the need is so great.
I have thought in the past the only thing that might help the greatest number of people is getting the govt to change its behavior toward lyme disease. Then the ins cos and medical establishment would make a U turn. The govt is now paying people to shaft us, like the NIH grants that went to people like Wormser.
If there was a fund, the people administering it would have to be good at ferreting out the really deserving. In the past, I have seen some who took advantage. Remembering a woman who begged for help to go to some lyme conference, and was given funds, only to turn up later on the board and talk about her nice Florida vacation that she just gone to. If she could afford this, why was she asking for money to go elsewhere for a conference. So, there will be cheaters. Need astute fund handlers and rules about what the money could be used for. Would it pay for rife machines, trips to Germany, new "cures" ????
Well, if you can get sizable donations, it still might be worth doing until we have a better attitude from the govt.
Healthcare in this country is expensive and the system is not set up to cover the greatest number of people. And certainly not set up for expensive chronic conditions.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
That's something I've always wished I could do...but the logistics and the $$$ issue are hard to overcome.
The biggest issue is WHO to administer and run the non-profit.
I would also stay away from politically charged names such as OccupyLymeCare. Clever, but ..
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kam
Honored Contributor (10K+ posts)
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posted
Not able to read all that you posted but caught the jest of it.
My idea has been to do something like modest needs does.
They helped me with car repairs in 2006.
I needed to apply first. Volunteers looked at the application and let me know if I could take it to the next step.
The next step was to send or in this case...ask a local print shop to download my info to them.
Info needed:
Proof of income (In my case a SSI ltr) Driver's license Copy of estimate from auto shop
I know there was more but can't recall what else it was.
My need was posted on the web site. Those who wanted to donate could.
I think the deadline was 2 months.
If I did not get the amouont needed those that donated were refunded their donation.
I got the amount needed. A check was made out directly to the auto shop.
I was asked if I would be willing to donated $5 or $10 a month to help others out.
This was taken out of my checking acct automatically.
I had the choice to choose who I donated the funds to myself or choose a category:
I choose those who are disabled and need help and allowed the volunteers to choose which person to make the donation.
I know that they added to the amount needed...it was done on a percentage basis.
This was included in the donation process.
It helps with the cost of having the program.
I also know that they are able to get funding else where.
I will copy and paste an email I got from them recently.
I also typed out a thank you and this was posted on the web site.
I think I also had the option of having thank you's come to my email acct.
I do know that each month I was sent a thank you for the automatic donation.
And that most of the those that do donate are those that just have $5 or $10 a month to donate.
OK Brain is fading fast. I hope this helps.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
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posted
Couldn't find the one I was looking for but found this one.
Can't read it myself. Hope it helps with ideas
Dear Friends and Fans of Modest Needs -
I'm always happy when I can write to you with good news, and today, I have some wonderful news to share with you.
You might remember that, a few weeks ago, I told you that Modest Needs was on the verge of making its landmark 10,000th grant. Well, late last month, we did it! We came together to make our 10,000th grant. And even though I didn't have a hand in selecting who received that grant - Modest Needs' donors had this honor - I could not possibly have been more excited to see what that grant actually meant to the person who received it.
Many of you have written in to ask for more information about this Modest Needs milestone, and so today, I'm pleased to share with you the story behind the story of Modest Needs' 10,000th grant in a very special installment of 'Profiles in Courageous Generosity,' Modest Needs' most popular column. I think that, if you'll take just a few minutes to read this piece, you'll come away from it with a renewed appreciation, not just for the work we do together at Modest Needs, but for the power each of us has to affect positive change in the lives of our friends and neighbors, even in times as difficult as these.
I'm calling this installment of PCG 'More than a Milestone' (because it really is!) and it's online / available for you now at http://www.modestneeds.org/features/pcg/ I hope you'll take just a few minutes to see just how much good you did by offering a deceptively simply grant to a mom who, over the past two years, has suffered more loss than anyone should be forced to endure, and I know you'll be proud to when you learn exactly what you achieved by reaching out to this person.
Of course, once you've read this installment of 'Profiles in Courageous Generosity,' I'd be happy to hear your comments. You can share your thoughts with me simply by responding to this note or by sending mail to my personal email address, which is listed at http://www.modestneeds.org/contact And if you think your friends and family would enjoy reading this piece, please consider sharing it with them via Facebook, Twitter, or any other way you choose. I think you'll be glad that you did!
I'll be back soon with more Modest Needs news (there's lots of it!), but in the meantime, please know how very grateful I am to all of you for your compassion, kindness, and ongoing support of this very important work. I look forward to hearing from some of you soon, but until then, take care, and be well!
My very best,
Dr. Keith P. Taylor President / Executive Director Modest Needs Foundation http://www.modestneeds.org 'Small Change: A World of Difference' (212) 463-7042 x114
=================================================
If you believe in the power of human kindness to change lives, please consider making a tax-deductible contribution to Modest Needs.
Remember, the work we do at Modest Needs is funded exclusively through the generosity of persons just like you. Without your support, this work would not be possible.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Even for those with insurance lyme and coinfections is a very expensive disease.
Hubby recently qualified to have his catastrophic insurance policy kick in. But because insurance claims are so slow in processing I had to figure out how to pay for the IV meds up front until the primary insurance processed the claim and then the catastrophic insurance paid off the balance.
Even though hubby gets social security and my brother subsidizes our monthly living expenses I wanted to borrow funds short term -- ended up getting a loan at 30% plus interest thru Prosper.com on the internet as our credit cards are maxed out or closed. It was a 3 year loan which I paid off early and have one more payment to make.
We also get some help from the AICPA benevolent fund. Their application process is one that could be copied. They require copies of income tax returns and a letter from a doctor stating that you are under their care and a brief description of the illness and prognosis. The paperwork reuires a new application every 6 months -- personally I think annually would be more appropriate for a chronic illness.
Anyway they ask for a balance sheet listing income and expenses also. Requires deocumentation such as copies of all bank account and credit card statements. Also copies of utility bills and rent contract or mortgage if that applies.
The fund has a board that meets and reviews applications. They decide whether to pay a certain dollar amount of unreimbursed medical expenses monthly or whether to fund a specific item such as an expensive test or treatment plan.
Any major changes in expenses or income are supposed to be communicated to the fund within 30 days or something like that.
Hubby receives a monthly "allowance" to cover unreimbursed medical expenses. He has to provide documentation -- insurance EOB's and receipts from providers to get his expenses reimbursed. Without this fund we would not be able to pay for his herbs and supplements or out of network doctors or dental expenses or eyeglasses etc.
In setting up such a fund you need to decide upfront exactly what type of expenses you will cover -- just oral antibiotics or will IV also be covered and what about herbs and supplements as I mentioned? Or will it only cover people with no insurance etc etc? Things like massage and accupuncture are not covered under many insurance plans as well.
Hubby and I are both accountants so we have some experience in taxes and insurance issues.
Please send me a private email at the address below as I have a couple of ideas I have been checking into regarding funding ideas.
Bea Seibert
Seibertneurolyme(at) yahoo.com
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Lou - re whether people with chronic Lyme can afford to do so, this idea is for those who can and would like to -
I don't think the government is going to change its ways anytime soon regarding Lyme and co's.
I agree about getting funds to people who really need them. Re amount to pay, probably this fund would not have enough in it initially to handle big-ticket expenses.
I'm thinking along the lines of getting people to the doctor, plus some care associated with that. Needs to be fleshed out, obviously.
Lymetoo - good points - I'm not wedded to the name OccupyLymeCare - I'm just using it for now, since it's topical - everyone's currently using it as they pitch in collectively to meet needs.
Kam - thx for letting us know about Modest Needs! Now we know more about a program that's already set up for those who would like to try using it. And thx for letting us know how it works.
Bea - will contact you - thx. Nice that you have something like the AICPA to call upon.
Ok - more ideas - I do see this as a time and space just to think about it all -
It's just been inspiring to see so many people getting helped at all the Occupies - like for example, homeless folks are getting fed, clothed, sheltered and treated medically,
all the unions here have endorsed it and many are actively assisting, the not-camping public is dropping off so many donations - one guy drops off 99 sandwiches everyday in San Francisco, for the 99% idea!
So, back to us - perhaps doctors could contribute a little to the fund, like a small percentage of their gross, or number of patients -
Perhaps we could widen the concept to list what people do as a paid service, whether it's Lyme-related or not, and then they give a percentage to the fund.
What if people want to do community actions, like an auction, etc, and donate proceeds to the fund.
What if it were announced at every Lyme support group? All the 5s and 10s that people might sign up to give each month could add up, let alone those who are able to give more.
And nonLymed folks would certainly be invited to contribute too, including on behalf of some they know with Lyme and co's.
I think the site could also list the kind of care being covered as it happens - no names, of course - like X number of people are being helped to get to the doctor, X number are getting help with supplements, etc.
Donors could potentially say what kind of use they want their donation to cover. Also if they would like to be in touch with a recipient, and vice versa, if a recipient would like to know the donor. Could make for a nice bonding.
More thoughts?
Posts: 13116 | From San Francisco | Registered: May 2006
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kam
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posted
I don't know what it would cost to set up a web site. But, I assume that is one of the pieces of the puzzle.
People could donate via the web.
Yes. Using a non profit that has all ready been set up would be good.
CALDA comes to mind.
KNowing what resources are all ready out there would help too.
For example in AZ, I found a place that donates power chairs.
Which drug companies we can go through to get meds needed from those who have actually gone through the process.
I know personally I need to drop medicaid in order to get meds needed.
I also need to drop medicaid to be able to see a LLMD and pay out of pocket.
Things I need are the funds to see a LLMD, funds for gas to get there and then hopefully the LLMD will know which drug companies I can go through for meds.
Someone to help with household chores...perhaps 2 hours a month would make a big difference.
I know others are not able to do basic household chores since lyme and company hit.
I do have 4 hrs a month paid by the county but it is just enough to keep me above water.
I was not able to get groceries last week so she was not able to make me a crock pot meal or somethign for this week.
She also did not have the time to change the bedding which has not been changed in about 3 months now.
Nor make phone calls needed for an appointment to the new primary car doc which I have been trying to do since Oct.
Nor was she able to figure out how to hook up the TTY. It is a 4 step process. I asked her to read the instructions to do so and she just ignored me on that one.
Gift cards for food would be good too.
Gift cards for gas.
I know there are a lot of needs out there.
I have wanted to start something like this up since coming down with lyme adn company 10 yrs ago but still haven't gotten to the point where I could do something like this health wise.
Seeing what it would cost to set up the web site might be the first goal.
Then coming up with the funds to do so.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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posted
Though FB I have seen different organizations donate funding.
They request applications from non profits that are all ready up and running.
People vote on which organization they would like to see the funding go to.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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posted
Toyota recently donated about a dozen cars to non profits to help with their organization.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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posted
Again, I am not able to read what others wrote.
I just had another thought. I would think we would need to set up a board and a way to be accountable.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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posted
How about an ebay account to raise funds. Someone whose health is doing well enuogh to take pics and post and send.
Others could mail items to this person to donate
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
This idea has really been in the forefront of my thoughts lately. My Dad, just started a company that helps non-profits start-up. They go in and help the non-profits figure out how to really function and meet needs. I was thinking about starting one that cared for Lyme patients, like you all are discussing here.
I will have to keep mulling this over. All that to say, there are people out there that can help you start the process!
Posts: 13 | From Los Angeles, CA | Registered: Feb 2010
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kam
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posted
Good point Shidove. I too had thought about needing help with someone who has had experience.
I had written to a few people in the past but never received an answer.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Anyone else interested in being part of an emailing group to explore possibilities for creating some kind of foundation to fund Lyme care? If you're interested, please pm me - Robin
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Up - anyone else want to brainstorm funding arrgts? Please pm -
Posts: 13116 | From San Francisco | Registered: May 2006
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kam
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posted
I saw a program on TV while channel surfing. I wish I had been able to write down the info.
But, it was about Las Vegas and two people there who provide services such as: helicopter rides over the Grand Canyon, tailored suits for those who would like to go to certain restaurants, a place that serves a drink for $10,000, a world famous tattoe artist that is on call 24/7,
...After I saw parts of the show, I thought that it would be great to connect with the connections the two guys serve.
...
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Uh-huh, Kam, you're sounding adventurous - as in who would like to ride over chasms or get tattooed and get the payment donated to Lymecare? I think some might prefer to get dr-u-u-u-n-n-k-k for 10K instead...
Posts: 13116 | From San Francisco | Registered: May 2006
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kam
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posted
Robin...I was just thinking of contacts to help the cause.
Maybe these businesses would agree to a percentage going to lyme disease once a year.
I know one of the fund raisers for an individual person with lyme disease a while back had a long line to get a tattoe by a world reknown person.
Who would have thunk it??
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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posted
You had some good ideas on getting funding too that I read on the CA yahoo.
I was thinking we need to have these ideas written down.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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posted
I know a lot of organizations do a Golf Tornament to raise funds.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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quote:Originally posted by kam: Maybe these businesses would agree to a percentage going to lyme disease once a year.
This could be a way to go too, getting a small percentage of financial transactions to go to the fund.
This is a time to brainstorm what could be done. Anyone is certainly welcome to offer some ideas here.
We could also do it at a site specifically set up for that purpose. I did set one up this week - please pm me if you're interested in tossing around ideas in a small thinktank group.
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