Topic: NEED PROFESSIONAL HELP TO START CHARITABLE ORG FOR LYMIES IN NEED
stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
I am in the position that i have been unable to start a charitable org for lymies in need. i do believe i can collect funds, but need the protection of a non profit charity base to do the collection.
i have tried for one year without success. if anyone is a lawyer out there i need your help and wisdom for this endeavor. i can no longer do it alone and none of the lyme organizations are set up for this kind of funding and collection.
this is not a scam, as betty is well aware of the problems. i have been working with betty for a year sending money to people in need, but this is not a viable alternative anymore and we as lymies need corporate support.
i do have a major head of a IT tech firm interested in helping, as he had lyme disease, but we need a legal means to do this effectively.
any ideas or help will be appreciated
docdave
[ 28. June 2008, 09:28 AM: Message edited by: stymielymie ]
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
DocDave...this is a WONDERFUL IDEA. I don't know what it takes, but I support you 100%
Posts: 2903 | From AZ | Registered: Feb 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
HA!
I just got done writing suggestions for you at the other post. Didn't know you were going to be asking elsewhere, sorry.
Hope the suggestions here help! This is what I posted.
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Suggestions..
Contact lawyers in your state and ask them who might be able to set up a charitable organization for you. Here is one site that may get you started.
If they don't help or can't do it, then ask them to refer you to someone who can. They usually have a list of referrals.
And/or contact your local Elks Club, Lions, Moose, VFW, Red Cross, etc and ask who they have used to help them.
They don't need to be Lyme literate to help set up an organization. Plus... most Lyme literate volunteers are swamped with projects already... and are sick themselves and/or have sick family members..... so looking for someone to commit to something extra, within the community, well... it would be difficult to find someone I would think.
Before you approach an attorney you will need to get all information straight as to exactly what you goal is and how you plan to accomplish it. On paper is best. Then they can suggest what they think would work best for your situation.
You might also Google book keepers or accountants to see if they can assist you because the tax work, filing stuff, etc can be difficult if you are unfamiliar.
Keep in mind, it isn't an easy process and takes a good while to file and do all the paper work... so you need to prepare to stick with it once you get it going.
That is one of the reasons folks haven't just "done it" before.
And your work helping others has always been very special to so many. Thank you dear one... and keep up the good work!
posted
I would contact CALDA. They have a lawyer that is on their board who is open and helpful and they also have a retired lawyer on their board who is also helpful. One of the two of them could point you in the right direction.
Once you do have this set up please let us know because I have been trying to decide what non profits I want to put in my will.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"I would contact CALDA. They have a lawyer that is on their board who is open and helpful and they also have a retired lawyer on their board who is also helpful. One of the two of them could point you in the right direction."
One is out-of-state on a trip (just left)... and they are very busy with tons of Lyme work... and very sick family. I've been working with them this past week to help out... so I am familiar with current situation.
My bet is... they would most likely suggest getting someone in your state to assist... but if you want.. certainly try. I just don't know if they have time with doing all they do... to do this also... which is why I sent you directly to your state lawyers for help.
Laws are different in each state... and this would put more of a burden on them if they were to try to assist.
posted
Hi - please don't take this as a solicitation - I am not even going to provide info in this thread - if you want more info about the program please pm me....
I just wanted to let you know that my husband is part owner of a Softerware co. that provides Software to track fundraising for nonprofits.
I wish he could donate the software program to your cause once you get started, but unfortunately it's against the policy of the co.
Anyway, they have an "online version" of the product that is pretty cheap and you pay monthly - it's for small nonprofits that are just starting out
I think your goal here is wonderful, and I know this is not answering your original ?, but if you ever are in the position that you think you could use my info just pm me....
best of luck
Abby
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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bettyg
Unregistered
posted
dave,
so glad you posted this so it is a post TO STAND BY ITSELF in using the search feature later on.
glad tincup offered suggestions again, and others too.
we do have 3-6 lawyers as members! wrong; just found 11 listed, and many do NOT list their jobs!
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bettyg
Unregistered
posted
up for weekend crowd!
so from what i remember in tincup's statements, what we need to do FIRST IS THIS:
... write down what we want this organization to do; DOS AND DO NOTS!
it's required so when anyone is approached about being a SPONSOR, WE ARE MORE CREDIBLE BY BEING ORGANIZED!!
so my suggestion on this is:
... for those wanting to be on an ONLINE COMMITTEE WRITING UP THESE STATEMENTS TO SEND THEM TO .....
THAT'S THE 1ST THING; who wants to HEAD this up for now???
folks, i just can NOT handle anything more than what i am doing now!!!
but i'd be willing to comment/etc. as i have it in my will to be designing funds for something like this!!!
i've chosen 3 lyme activities...
1....adult fund for folks who can not afford to go see llmds and set up by LDA;
2...LDA'S "EDUCATION" program...
3...COLUMBIA'S LYME RESEARCH CENTER for research, NYC
hope this gives you some guidance on what to start doing; putting our mouths/hands to BETTER THE LYME WORLD!!
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
betty my idea of the fund is strictly to back funding for llmd appts help cover the cost of travel help with our ssdis people that are living on $600 a month.
this fund is not for columbia or anything else it is strictly to help suppliment people in need!!!
if the fund gets large enough then we can funnel money elsewhere ,but for now, this is for financially unable lymies.
i am going to contact make a wish foundation and see if we can piggyback off of them, and maybe use them for our children with lyme.
people must understand ,there are hundreds of diseases, like lyme ,that need money for support. we are not alone and the money from charity is shrinking exponentially with the poor economy.
so thats my feeling toward this. i would like to be able to send out $5000 a month to people in need, that would make me very happy at this point.
docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
betty my idea of the fund is strictly to back funding for llmd appts help cover the cost of travel help with our ssdis people that are living on $600 a month.
this fund is not for columbia or anything else it is strictly to help suppliment people in need!!!
if the fund gets large enough then we can funnel money elsewhere ,but for now, this is for financially unable lymies.
i am going to contact make a wish foundation and see if we can piggyback off of them, and maybe use them for our children with lyme.
people must understand ,there are hundreds of diseases, like lyme ,that need money for support. we are not alone and the money from charity is shrinking exponentially with the poor economy.
so thats my feeling toward this. i would like to be able to send out $5000 a month to people in need, that would make me very happy at this point.
docdave [/QB][/QUOTE]
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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posted
Think a pro bono attorney in your state would be the ideal helper for this, if you can find one. Others have offered suggestions on this. Have you contacted the NC lyme disease group? They might have some contacts. When I googled pro bono attorneys +north carolina +charitable organizations I got a number of hits, including this one:
You might want to do the same google search and see if any of these sound promising. Maybe call one and tell them the situation. I bet they will have suggestions, even if that particular one is not able to do it.
It is true that the lymie orgs are very busy already, but you might contact the LDA to get info on their procedures for vetting applications for help, as they are doing some of this already I believe, in a specific area. Just their advice, experience. Could do this in a phone call. Do you need the email addy? Probably a later step in your process, as setting it up and collecting the money will have to come first.
Posts: 8430 | From Not available | Registered: Oct 2000
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You could also contact united way, which functions as a community chest for non profit agencies, they might be able to give some guidance.
For legal, Legal Services is a nationwide non-profit attorney group that provides legal services to persons of limited incomes.
I do not know if the groups in your state would provide assistance in setting up a charitable orgaization, but they might. (We have one here in NJ that does).
If you want, I can do some research for you, to see if the process for setting up a charitable organization is any different than that for a non profit.
If it is the same, then you will need to get together a board of directors, develop a mission statement, a few other things that are evading my mind right now, and apply for 501(c)(3) status (tax exemption) with the IRS.
It's been a while, but I completed a 501(c)(3) ap. to set up a non profit. It's a lot like writing a grant. (something I have also done).
If you want me to find out if the process is the same, and if it is, give you some info on the process, PM me.
I hope that you are able to get this off the gorund.
thanks for your example on how YOU see this non-profit working.
in MY note above, I WAS USING "MYSELF" AS AN EXAMPLE, and at this point, this is how i SET THINGS UP FOR MYSELF IN MY/HUBBIES' WILLS!!
now if we could get something together in concrete, NO LOOPHOLES; i'd consider changing my will in future. ***************************
at this time, we can NOT give money in amounts i have in mind; MAY need that for our future nursing home expenses.
with my hubby with advanced parkinsons: starting to fall and non-stop rolling motion tremors 24/7; we could be headed to assisted living much sooner than i anticipated. time will tell. nursing homes will eat it up fast in we're in there quite a few years!!
bottom line; my future donation will be AFTER our deaths; not before!
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I would think the Turn the Corner foundation would be a good fit; they do lots of funding of other things; have you contacted them? They are used to working with big money, have lots of big donors, have Daryl Hall helping them....
Just thinking you might want to contact them first if you haven't already, if that doesn't work, certainly starting up a new non profit is very doable!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Good idea Tracy. Might be a whole lot less time consuming and easier just to piggyback this effort onto an organization that already has 5013c or similar status. With yourself and anyone else you want as the chiefs for this particular focus. Maybe sound out some other lyme orgs, like NC lyme foundation, LDA, Turn the Corner, etc.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
OK, I found the thread. I will donate pro bono time to draft a certificate of incorporation, bylaws and an application for 501(c)(3) status.
I do not want to serve on a board for this organization so others will need to do that. I practice in NY so that would be my preference, but I'd consider other areas. The filing fees alone are $400 (state and federal). I can give time but not filing feed.
I agree that finding another existing entity would be easier in some ways, but not in others. They might need to change their organizational purposes to include this type of charitable giving.
If you are interested in pursuing this further, please let me know. If not, I have plenty to do. Also, on a final note, I am not well myself, so things do take me time.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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I have also set up many corporations and business ventures before being sick.
You could actually create the entity online at mycorporation.com or legalzoom.com there are others.
This will give you your shell/paper corporation 501(c)(3). You can even have them file with your state and set up DBA for your name.
The above is easy and could be done in a couple of hours.... what you need next is a TAX ID number. This can be requested online via irs.gov. you can also read more about the requirements and rules of a 501(c)(3) corporation. I think yours would be pretty straight forward.
Last-- you will need an accounting software, quickbooks or even excel to keep track of your reciepts, donations and expenses.
You will need to file an annual corporate tax return each year for the entity.
With your corporation, tax ID number and accounting system you could accept donations from anyone-- including goods and services-- then pass them on to Lymees in need.
If you personally put money into the corporation, then you would then be able to account for that money as a donation.
You need the corp and tax Id number so you can provide this to people and business that make donations-- if they want to claim the money on their taxes, otherwise it does not matter.
If you want some business help in getting this off the ground- including a brochure or web site that describes this charity, it's goals, how to give money, success stories etc PM me.
I am sick like others but am not working and will do what I can. Have done all of the above before several time over.
Take Care
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
whoopie, 2 members have stepped forth to help get something going on this!! i appreciate both of you offering to help and get this moving forward.
as mama stated, i do think also that EXISTING lyme charities should be looked at first making this FLOW instead of reinventing the wheel.
Thanks from my heart for stepping forward here!!! hopefully, this will move others to step forward now with their limited health too.
you all know what i do daily here; keeps me swamped with the 20-45 who have been joining here daily for 2 weeks now !!
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bettyg
Unregistered
posted
also, i have just typed a letter to send to another member here who may be seeing and POSSIBLY talking to a celebrity who heads a CHILDREN'S charity!!
i'll be sending her my letter to this person, and i've asked if they might share step-by-steps with us TO GET OUR LYME CHARITY OFF THE GROUND!
will keep you informed IF WE HIT PAY DIRT with her visit this week there!!!!
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bettyg
Unregistered
posted
up for morning and afternoon posters...
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posted
I really want to thank everyone who is working on this charity so that Lyme patients without the funds can go to the doctor!!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I am still interested in doing the drafting needed for this org, pro bono. It also appears that someone was looking for a place to donate $$ and this could be it.
Stymie are you still interested in this? Please respond. Thanks.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
I'm certainly still interested in helping to organize this in anyway I can!
If anyone wants to work with me, just let me know, because I'm definitely ready to get started on this!
Let's start working toward making this a reality, as soon as possible, so our less fortunate lymies can get the help they need and deserve!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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posted
Since I am in the process of starting up a non profit myself, I can add to the many things mentioned above that you will need - a Conflict of Interest Policy and Bylaws.
Can you fix it, then let me know, so I can learn more about your developing organization?
I thank you, on behalf of everyone who has lyme disease, for having the courage to take the initiative to support lyme literacy, not to mention all of your time and effort devoted to it!
I wish you nothing but the best with your daughter and organization!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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bettyg
Unregistered
posted
WONDERFUL, more interest!!!
way to go gang, and up for the SUNDAY crowd to read about this FUTURE ENDEAVER OF A GREAT CHARITY TO FUND .... for the less fortunate lyme patients without funds!!!
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Cobweb
Unregistered
posted
Stymie-would this site help-it gives concrete step by step instructions on how to set up a non profit organization...
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Hang in there Dave and others.
When I went to get my service dog, they had just come back from a fund raiser.
They had been raising funds for a long time.
This is the first time they were able to get enough to purchase a van with a power chair ramp, a new power chair, have funds to do more around the grounds for the dogs and build a place to have the classes on site with the dogs, and provide for the dogs needs for ? amount of time.
it was so good to see and much needed. The CEO of the organization started out of her apartment.
She is power chair bound due to polio. Just missed the vacine.
REminds me so much of lyme disease. Hoping our time will come too.
I sure would like to be able to purchase what I call the Healing Ranch 2 miles out of town and have a place for people to go to while they are recovery from lyme disease.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
stymielymie and catskillmomma - I know both of you are still on lymenet - Was this accomplished?
I used to work for a non profit that provided rides, meals and other assistance to developmentally disabled individuals.
I was dreaming up a non-profit providing services for people with lyme disease and other chronically ill people who need help.
Wondering what it would take to make that dream a reality...
Ideas welcome!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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