I'm interested in starting a non profit foundation benefitting Lyme patients on the east coast... no just children, but families, sick adults who have become broke due to Lyme.
Applicants would need a doctors descriptions on their treatment, whats meds they are on, social security statement, etc.
In order to start this, I was thinking of setting up a gofundme.com page to crowd fund it. I am a graphic designer and setting up a really nice website would be very easy.
I have looked into registering for the state, licenses, etc. Would anyone be interested?
I see all of the Susan G. Komen funding and races...all the pink. I would like to maybe see a race with green balloons one day and spread awareness. I know this isnt easy to do. There is the Lyme Light Foundation but that is all the way in California.
Posted by Keebler (Member # 12673) on :
- Every local United Way has an agency liason. You can ask to talk to them about the requirements of a 501(c)3 organization, including the legal framework, board of directors composition and bylaws - for both state and federal requirements.
You would not need to apply for funding from United Way for they are there to help ANY non-profit or not-for-profits in several ways. However, once the certification has been obtained, if you set it up within the UW guidelines, you could request funding for their next season beyond the time your documents would be in order. -
Posted by Keebler (Member # 12673) on :
- Perhaps it would be easier to set up a PROGRAM within an existing organization? Some of the top groups:
Your STATE, regional &/or local lyme support groups or networks. -
Posted by seibertneurolyme (Member # 6416) on :
xrunner -- I too have seen the need for funding for adults with tickborne diseases. Not really sure what is the best approach though.
I attended the PAL conference and am waiting for them to update their website to see what direction they have decided to go in. Some group leaders seemed to want to focus on legislative issues for example.
I did get the impression that the individual groups were wanting help with fundraising, but they seemed to want the funds to go to their individual groups rather than one specific cause or umbrella organization.
Might be a good idea to either contact PAL or as Keebler mentioned some of the other lyme advocacy groups.
I really think the PAL idea is a good one if everyone can work together as obviously there is quite a bit of duplication of effort with so many different groups.
Bea Seibert
[ 10-21-2013, 10:32 PM: Message edited by: Robin123 ]
Posted by Kudzuslipper (Member # 31915) on :
Xrunner. I am no help, but wanted to thank you for wanting to do it. Lyme can make a person very selfish.
And I don't mean that negatively... It is just a fact that that you need to spend so much time focusing on yourself,
with limited energy and compromised brain function and then there is the pain.... There's very little left for thinking of others.
So thank you! I wish you luck in getting it started.
[ 10-21-2013, 10:26 PM: Message edited by: Robin123 ]
Posted by OptiMisTick (Member # 399) on :
The best way to start a nonprofit, and anyway it is required to have at least 3 members for the Board, is to start it with a group of like-minded people who have the same goals.
Then the work can be divided, the company can be convivial, the fees can perhaps be split, the pooling of ideas can have excellent results, and it is not so overwhelming as to discourage someone from the idea from the start.
Good luck and go ahead with this idea - other people will jump on board I am sure, if you broadcast what you wish to accomplish!!
[ 10-21-2013, 10:26 PM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
Thanks for being willing to do something!
Note: the Lymelight Foundation offers grants to anyone 26 years and under for Lyme care. They have fundraisers, like Dart For Art, where artists donate a work of art and people who have already paid to be there "dart for their favorite art piece."
Posted by kam (Member # 3410) on :
I saw that gofundme had a place for non profits the other day and thought of those with lyme disase.
My health is not doing well enough for me to do something like that right now. I am on the West Coast.
Keep us posted.
Posted by seibertneurolyme (Member # 6416) on :
Optimistic -- I do know that there are charities that fund patient treatments. Don't know all the ins and outs of 503c organizations etc. But I just posted about one such organization recently -- not restricted to lyme patients.
I don't know if I posted this as I can't go back and read what I posted.
But, when my friend first gave me her 93 Nissan Pathfinder. It needed work.
I went thru modest needs to get the funding.
I thought they had a good format. Proof of income was needed. And some other things which I can't recall now.
They also made the check out directly to the auto shop which I liked.
I just looked up and saw Bea's post. I am copying and pasting that as I also need help with treatment.
Posted by Ellen101 (Member # 35432) on :
I think this is a great idea! But I will caution you it will take some work. I was involved with a group that was trying to file as a non profit and the paper work and steps involved is exhausting. Yes, as some one else said a board is required as is a mission statement etc. You really need the guidance of someone familiarwith the steps need to file as a on profit.
I would be interested in helping in any way I can, but I'm not qualified to advise you of what's needed.
Posted by Ellen101 (Member # 35432) on :
I actually just checked out gofundme and you do it need to be a nonprofit.
Posted by daynise (Member # 39609) on :
I almost once had a non-profit. Got all the way to the last bit of paperwork and my board dropped out- it ended up being a blessing in disguise though.
What I can tell you is that the paperwork is a pain in the a... but you can do it. I had no experience but talked with multiple people who had set up a 501c3 and then used other people's mission statements and board descriptions as a template to work from- changing all the details and phrasing for my own organization of course.
OptiMisTick and Ellen have good information. I wish I could remember more but my mind isn't what it used to be. Just wanted to say although it may seem daunting, you can totally do it!
Get yourself a board, write the mission statement, list board duties, and write objectives, fill out the F1023, and file for an EIN number to legally register your organization name. This gets you started. Then you can raise money for the application fee- perhaps even by hosting an event on facebook and linking to paypal or something.
Sorry I can't be more help but I think it's a great idea!