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Onward and Upward!

February 14, 2012

The creation of a 501(c)(3) for Central Pain Syndrome is becoming the reason I get out of bed in the morning, and the reason I stay awake late at night. Every disability that I feel is a motivation – the lack of tactile sensation, the acid pain just under the dermis, along the entirety of my left side, the headaches and the spastic muscles that make standing up so slow and difficult, the problems getting to sleep, even the sense of isolation. It’s as if every unpleasant sensation I feel is nothing but a goad to get this thing accomplished.

Mary thinks I am jumping too far ahead of myself with plans and dreams. But I can’t stop. We have at least eight people who have volunteered for the team, some of them with backgrounds that will really help us. I got a book from the library, a publication from NOLO Press, called “Starting and Building a Non-Profit: A practical Guide.” It’s been the best resource I’ve found so far, more useful and specific than “Non-Profit Law and Governance for Dummies,” and even the materials from the New Jersey Center for Non-Profits. The Center, by the way, has its offices about 1/2 mile away, so it will be easy for me to visit them directly to get their assistance.What are my dreams for this organization? First, to get it up and running within 3 to 6 months. That means we have to:

  • select a name that is not infringing on anyone else’s trademarks;
  • reserve it with the State;
  • reserve the domain name
  • create a Facebook page;
  • write a mission statement;
  • create a Strategic Plan (good thing I was on that team for the charter school;
  • draft a budget;
  • find a Board of Directors
  • incorporate it with the State;
  • apply for 501(c) (3) status from the Federal government;
  • develop a marketing plan;
  • get the message out.

I am going to drive this project until we are collecting millions of dollars a year for educating the public and the medical profession, and funding research into a treatment and eventually a cure. I want the words “Central Pain Syndrome” and “CPS” to be as familiar as “Multiple Sclerosis” and even “cancer” in five years. And there’s no reason why they shouldn’t be. With so many people suffering from it, from such a variety of causes, and with the absolute pathos of the personal stories of the sufferers, this disease is perfect for being a media “darling.” It’s a horrible thought, but if we market CPS the right way, it will be a huge cause de celebre.I’m thinking beyond the cover of “Neurology Now,” the magazine of the American Academy of Neurology. We can organize patient lectures to doctors at hospitals around the country. We can appear on Montel Williams’ show, or on Oprah’s Network. Imagine a series of full-page magazine ads, each featuring a former pro athlete who got CPS as the result of the neurological trauma they suffered playing football, hockey, skateboarding, horseback riding, surfing, whatever. I want this organization to raise hundreds of millions of dollars, to have a paid professional staff, and name recognition.

All of this will only mean success if the organization can help to bring treatments, and eventually a cure.

All of my life I wondered why I was born to live through so many health crises, starting with my croup and tracheotomy at 8 weeks old.  I kept believing there was something important, something major, for me to do, and that it would reveal itself. Now I know. I am living to make this 501 organization a reality, to educate America as to what this particular form of Hell on Earth is, and to do everything possible to bring about a cure. Everything else has been leading to this. We are going to defeat CPS in my lifetime, even if I have to live to be 80 to see it.

One Comment leave one →
  1. Alison Martin permalink
    March 22, 2012 9:58 AM

    Good luck with the project …. hope the awareness raising will spread to other parts of the world also!

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