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Getting a 501(c)(3) Started

February 3, 2012

It’s way past time to form a non-profit national advocacy group for CPS. The response that I’ve gotten from the video has been so positive that I’ve decided to just go ahead and begin the process.

I’m not really familiar with how one goes about creating such a beast, but I’m relying on information I’ve gleaned from websites such as Reference for Business, which had an entry from Encyclopedia for Business about non-profit organizations. There’s also a 38-page book, Starting a Nonprofit Organization, on BoardSource.It feels a bit like old times, working on the formation of Greater Brunswick Charter School back in 1998. I was Chair of the School’s Board of Trustees back in the early ’00s, when we were under a mandate from the State to put together a policy manual. Board Source was useful back then, as well. The process of creating a 501(c)(3) for CPS has elements of creating and passing the school’s charter, as well as the process Jack and I went through when setting up our business.

So I am going ahead with forming the 501(c)(3)  now. Last year, I felt like it wasn’t my place to take over such a thing, because others might want to have a say. Well, it’s been a year and nobody has really said “Boo!” about it, except to cheer the idea. Nobody actually wants to bell that  cat, however – just having CPS is hard, exhausting work enough. For me, however, it is reinvigorating to actually have a real way to fight this monster,

We start by forming a small-to-medium sized committee that does all the work of writing the purpose and goals pf the organization, writing the bylaws , all all the other paperwork. Doug has already agreed to work with me, as well as Becky. We would essentially be a committee that takes care of all the details of getting the thing created, including people that would be the officers.Once that’s all been completed, we incorporate. (I assume that in will be in the State of New Jersey.) Then the corporation applies to the Federal government for non-taxable status.

I’ve also got an old friend who actually started a non-profit in NJ so will ask him about the best way to go about it. . This is all very exciting to me. We may actually be able to be working towards a real cure here. The first thing we should do is create a survey to send out to all members: where they live, their ages, their status (sufferer, caregiver, medical, etc.) hw they got CPS, how long they’ve had it, its effects, and whether they would be willing to serve as the “state agent” for their state who reports to the board. We’ll also need a President, a VP who could take over for the Pres when the Pres is too ill or there is a conflict, a Secretary, a Treasurer, and of course trustees. We’d have to organize all that, and create a mission statement and bylaws (those are fairly boiler-plate). We’d probably need a donation(s) or grants to cover the start-up costs – which we would seek after we’d formed the committee and written all the other stuff.  Then we get an accountant and a lawyer, file and create a corporation. That corporation applies for 501©(3) status. I’m amped to do so much of this, but know I cannot do it alone.

Doug, also is very eager to begin. am looking forward to seeking out “celebrity voices” to speak out for CPS. When I realized how many pro athletes must end up with this, I envisioned a whole campaign with former football stars, soccer and hockey players, boxers, skate- and snowboarders, equestrians – all talking about CPS. I can envision getting money from the NFL and NHL. All the drug companies that make the Lyrica and Tegetrol and Neurontin that we use off-label would also have both an interest in supporting the organization. After all, we are an ideal client base for them. I can foresee the day when we testify before Congress, and end up with research grants against this scourge.

I want CPS to be as familiar in 10 years as Parkinson’s is. There are hundreds of thousands of people suffering from this with no idea what they have. We are going to-create our own ability to help ourselves. We can do this. The idea of a website with HUNDREDS of testimonies is one of the most valuable marketing tools will have. A formal 501©(3) will be able to educate the public and the profession, and collect money for research.

I registered the domain messagsefromhell.org last night.The plan is to solicit direct testimony from patients, on video, andpost those to YouTube (under the REAL name, centralpain, rather than my typoed cemtralpain). Then we keep them permanently in one place at “Messages from Hell.” I tell you, those early Christian writers – as well as the Bible – were very specific about what Hell would be like. And what they describe is exactly like CPS. The site will be very powerful in explaining to the rest of the world what CPS is. 

You, know, I’d produced a crappy-looking video: dull shots, poor sounds, etc. I have to get a better camera. But that video seems to have touched a lot of hearts. Having a whole webpage full of them should be the video equivalent of the “parade of kids on crutches” that used to be shown at the end of the Jerry Lewis MS telethon,

 One of my FB friends, who had never HEARD of this before, watched the video and realized that at least two of his friends must have this. They haven’t been able to find help for their pain, because they didn’t know what they had. He suggested we get a ribbon. I was thinking just a simple piece of orange grosgrain, about an inch wide, with a “V” shape cut into the top.  It can represent the “fire” of CPS. And our charity’s motto? “Dousing the Fire for millions” What do you think?

This is my vocation. When I was a little girl, I wanted to change the world, to make it better for suffering people, because I myself had known so much pain, had been deadm and then revived. I believed I had a purpose. All through my young adult life, I still believed that, although I had no idae what the purpose was. I figured that it was involved with some thing that hadn’t yet been invented, or a cause that hadn’t yet emerged. Well, I’m going to take thaty childhood superstition and make it real. Forming a non-profit that educates the public and raises money for CPS research is the purpose that I am assigning myself – or rather, seems to have been assigned to me. After all, I would never have even heard of this disease if I hadn’t had my stroke.

How can a disease that causes such egregious suffering to so many have never been heard of by so many? That is what we work to change.

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3 Comments leave one →
  1. February 4, 2012 8:07 PM

    I like the orange ribbon idea…thanks for all the work you do! It does not go unnoticed!

  2. February 6, 2012 11:47 AM

    Thank you, Louise. I do like the motto “Dousing the Fire for Millions.” It gives people a very visceral understanding of what their help really means.

    I look forward to working with you on this. I do believe I could act as Press Secretary if Alia could share that role.

  3. February 7, 2012 8:55 PM

    Louise, Thank you so much for taking the initiative on this. I am happy to help any way I can. My mom is an attorney and has experience with starting up 5 other 501 c3’s. I told her your idea last night and she has offered to help.

    I too am very excited about this, it feels good to finally be validated and I want to spread the word. Just let Scott or I know what we can help you with.

    P.S. I can’t picture the ribbon? Do you think you could make one and post a pic?:)

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