Wednesday, December 24, 2008

Please donate to ACOR

As my longtime supporters know, two pivotal moments occurred in my care: when I was referred to my oncology team at Beth Israel Deaconess, and when my primary doctor Danny Sands handed me a slip of paper that said on it ""

The time has come when, for the first time ever, ACOR must ask for donations. Go directly to their donation page, or read on.


ACOR, the Association of Cancer Online Resources, is the community of cancer patients who gave me absolutely the best information I found anywhere on the Internet. I've mentioned them many times:, because what I got from ACOR made a huge difference in my sense that I could beat this thing.

Plus, ACOR communities give vital emotional support. Here's a message that came through today:

My husband is on chemo for stage 4 colon cancer, he is not very happy and a bit difficult to live with! I have been having bad headaches and had a brain scan a few days ago just to check there is nothing sinister, the oncologist feels it is stress but thought it best to check with my history, stage 3 RCC. [renal cell carcinoma, the type I had]

My mother is in hospital in a city many miles away and I have not been able to get there yet. This is hard.

Today I have my 3 children with their partners and 3 grandchildren coming for some festive celebrations. I hope to find the magic of Christmas in all this and I would like to wish this for everyone on the list too.
ACOR is a profound expression of people helping people using the Internet. It was conceived by a man whose wife had a bad cancer experience; he created it free out of its personal funds, it's grown to hundreds of thousands of users and each list is staffed by volunteers from the patient community. It's free to all and it's open 24/7, and believe me, both of those make an enormous difference when you suddenly learn that your butt is on the line.

Plainly put: no other resource anywhere outside my hospital gave me more accurate information, and nothing in the world gave me the confidence that the information I was getting from my hospital was accurate. My ACOR community was the best resource I had. And it's open to all: repeatedly we hear about people who have no health insurance, for whom ACOR is their only reliable resource.

Well friends, the time has come when ACOR needs our support. Please go to their donation page and donate what you can. The menu suggests $50, but of course smaller amounts are available - and larger.

How important is this to me? How important do I believe this is for the new world we're creating of patient-centered and patient-empowered healthcare? I myself am donating $1,000, in a year when money is not abundant. Your $5 or more will help too: as the email below suggests, we're going for breadth of support: many hands make light work.

The form gives you three picklists:
  • Main ACOR group: mine is KIDNEY-ONC
  • In honor of: "general" is okay, but you can use "in honor of a cancer patient" (moi) or "in gratitude for a doctor" (David McDermott) or "a nurse" (suggestions: Kendra Bradley, MeeYoung Lee, Gretchen Chambers)
  • Amount
I'm breaking mine into several.

Funds usage: Detailed plans have not yet been laid out but I myself have joined ACOR's "inner circle" funds team, and I assure you the goal is to improve ACOR's equipment and software, making it more reliable and more available to more people. At one point in 2007 the entire system went down. The network was unavailable for days, and some messages were lost forever. As awareness of ACOR spreads and the whole world of patient empowerment spreads, we simply can't go on forever with an all-volunteer staff using cobbled-together equipment and software. Plus, we want to add technologies to reach people who don't even have a PC ... today some of the most disenfranchised citizens around the world use only their phone for Internet access.

Thank you. Below is the email that I myself received about this, from Robin Martinez, one of the volunteers who runs the KIDNEY-ONC group. (She's an oncology nurse who lost her husband to kidney cancer.)


For many of us, this mailing list saved our lives or our sanity or both. Besides excellent information, we found comfort and friendship here. Today we can do something in return to make sure that we and others continue to have the same great experience with ACOR.

ACOR runs mostly on love and dedication -- but we do need some money as well. We must pay for hardware, software, web storage space, bandwidth, administration, legal costs, accounting, etc. Right now we are scraping hard to pay these bills.

Your contribution will make a difference. We are a non-profit group with proper credentials, so you can take a tax deduction for any donation to ACOR. We have a very easy way to donate on line via Google Checkout, which gives us 100 percent of what you contribute. You'll receive an immediate receipt by email which is suitable for tax purposes.

Please visit today:

While you're at it, please ask your friends and family to donate too. They probably know how much this list means to you. If every list member gave $5 and got nine or ten other people to give just that much, ACOR would receive over $1,500,000!

If someone must donate by mail, here is the address:
173 Duane St. Suite 3B
New York, NY 10013

However -- we strongly encourage giving online. That way there won't be any donations going astray! The procedure is easy and quick, and you get your receipt the minute the donation goes through.

No comments:

Post a Comment

Your comments will be posted after they are reviewed by the moderator.