Thursday, November 27, 2008

On Giving

Yesterday, I wrote about giving thanks. Today, I'm writing about just plain giving.

I just saw an inspiring news report of an 11 year old boy who was dying of leukemia and had just one wish: Feed the homeless. Word got out and people responded in droves, raising tens of thousands of dollars and a boatload of food in the last weeks of this young boy's life.

I'm not dying imminently, but I think about dying a lot more since my diagnosis with gastroparesis. I've had a great life, and it really doesn't make me sad to think about ending it; in fact, since I'm going to decline a feeding tube, and I know I eventually will get to the point at which I can't keep even fluids down, I have to have a plan for ending things when it's the right time.

But it's not the right time yet. My dream -- my goal -- my motivation between now and then is to make Advocacy for Patients with Chronic Illness self-sustaining. That means moving us out of my house and into commercial office space, and hiring another lawyer who I can train before I don't have the energy to do so any more. I've thought and talked about merging with another organization, but the right match hasn't come along yet (or I've found it but it hasn't found me yet!). So I am working on the assumption that I have to make this happen on my own.

Right now, our annual budget is about $175.000. That supports me and an administrative assistant, plus our expenses -- health insurance, electronic legal research, office supplies, postage, printing -- just the basics. We've taken over my house, but we don't pay rent or utilities or even phones. Our budget is lean. Still, in 2009, with the economy the way it is, I'm afraid we won't manage to raise even that much this year.

But I'm not giving up on my dream. That means raising an additional $100,000 next year, or a total of $275,000. That would cover the cost of renting offices, buying furniture and equipment, and hiring a second lawyer who is experienced enough to be positioned to take my place at the helm some day.

Here's why you should care. We are the ONLY organization in the United States that provides free services focused on chronic illness, including writing health and disability insurance appeals, helping people navigate the Social Security disability maze, negotiating with employers and schools to accommodate people -- children -- with chronic illnesses, and helping people find resources. Indeed, we do whatever we're needed to do and we never turn anybody away. We're not always successful, but I think everyone we work with knows that we put our heart into everything we do.

I'm not a cute 11 year old boy. I don't suppose word will get out that a chronically ill 50 year old woman started an organization to use her legal skills to benefit other chronically ill -- and now she's sick enough that she has to think about life after her life is over. So that means I really need your help. Can you help me get the word out? Doing this may take a lot of $5 and $10 donations. That's fine with me. However it happens, as long as it happens, my life will have been worth living. I will have left a legacy.

This is not a sad post. This is a call to action. There's no way I can do this alone. Will you help me? Please?

Just so you know, I've revised my will. Everything I own (except for family mementos, which will go to my nieces) will go to Advocacy for Patients if it still exists after I die. And I have dedicated my life -- every moment when I'm not in bed or at a doctor's appointment -- to my goal of making this organization self-sustaining. I'm doing everything I can. Won't you help? Jennifer

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