Wednesday, June 25, 2008

PCD Foundation is "Charity of the Day" Today

As so many of you know, fundraising, awareness, and research are critical for improving patient outcomes and quality of life. For rare diseases that don't get the face time and air time more common disease receive, this is especially true, and disease organizations are often our lifeline. So, I was pleased to get an e-mail last night informing me that GoodSearch named the PCD Foundation the "Charity of the Day" for today, Wednesday, June 25, 2008. Rather than forward the e-mail, I've included text from the PCDF press release below:

" and are convenient ways for the PCD community to participate in fundraising for the foundation with no direct out-of-pocket expense. is a search engine (powered by that pays a penny per click to the designated charity. is an online shopping service that can be accessed on the homepage that allows buyers to purchase from a wide selection of popular vendors with a portion of the sale going to the PCDF. The buyer does not pay any more than if they were to shop directly from the merchant.* Together, and are powerful and convenient revenue-generating options for non-profits of all size. For small non-profits, like the PCDF, they are an essential part of our revenue stream...

*You can shop at hundreds of great stores. Amazon, Best Buy, Macys and many others have teamed up with GoodShop and every time you place an order, you'll be supporting the PCDF!"

Here's an idea--if you're heading to Amazon to buy Life Disrupted, do it today through and help a wonderful cause. As a PCD patient myself, I can't say enough how important the community-building, education, and research efforts the PCDF spearheads are.

(And no, I didn't plan that shameless plug. The timing was just that good!)

PS--Tonight at 8:30 pm EST I'll be a guest on syndicated health columnist Judy Foreman's Health Now, an Internet radio show on HealthTalk . If you're free, tune in and listen, and click on the link to register and ask a question.


Anonymous said...

Hi Laurie:

Congrats on your new book!

I was wondering, do you think it will help people with chronic pain?? I am a 28 yr. old (Boston!) woman who has suffered with severe chronic back and leg pain for 12 years. All sorts of surgeries later and I'm still in pain and even the morphine I take every day only takes the edge off. :(

Anyway, I have ordered a few books on chronic pain from Amazon and was thinking about ordering your book too..but couldn't tell if it also applies to patients who suffer with chronic pain?

Thanks so much,

Laurie said...

Hi Danimal,

Thanks for getting in touch! Yes, the book definitely applies to people living with chronic pain. I bring in several patients' stories, some of whom live with severe pain from fibromyalgia, Ehlers-Danlos syndrome, chronic pancreatitis, arthritis, etc, so their stories and perspectives and insights will certainly resonate.

Additionally, there are so many themes that span across the disease spectrum: feeling isolated, not being able to work or socialize, loss of identity due to illness flares, strain of symptoms and surgeries/interventions on relationships and careers, financial stress due to lost wages, medications and medical bills,etc, etc. I think that those things hit close to home whether you're in constant pain or have another constellation of symptoms.

Plus, it's paperback, so it won't set you back too much :)

Since you're local, is there a chance I'll see you at a reading event? It's always so nice to hear from people around here...

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