Sunday, May 10, 2009

Current Project: Volunteering for the Lewy Body Dementia Association

So I got to about 21,000 words (40 single-spaced Word pages) of my new novel (code-named NEW NOVEL) when I hit a wall. I was going at a solid clip of 1,000 to 1,400 words a night at least three or four nights a week. Then I reach a point where I wasn't sure where next to go. I tried one direction then killed it. Tried another and wasn't sure. Reworked it a little and it may work out but I've been busy and lost momentum so I haven't been devoting the time and brainwork to the project like I should.

Which doesn't mean all is lost. I'll get back to it. I'm far enough along that there's no going back. I like what I'm writing, it may be too thinly veiled as far as being autobiographical is concerned, but I can always work in more creative nuances in the second draft. The other reason why I'm not overly concerned is because I've been busy with worthwhile things. One is a fairly meaty freelance project. The other is a volunteering gig.

Loyal readers are aware that my mother died of Lewy body dementia (LBD) 10 years ago, and that last year I wrote a post about her on this blog that found its way onto an LBD Facebook page and the online forum of the Atlanta, Georgia-based Lewy Body Dementia Association (LBDA). Through the kind of instant serendipity that is endemic to social networking on the Internet, I've become tied into a hodgepodge community of LBD-affected folks that include a soprano, a cardiologist-turned-memoirist, a support group leader, and the leadership of the LBDA. Though I didn't expect my blog post to draw me into this network and among the volunteer ranks, this is exactly what's happened. And I'm loving it!

To date, I've completed two projects and have begin sharing ideas I have on branding this insidious disease, which is the second-most common form of dementia after Alzheimer's disease. The gist of my argument is that people's eyes gloss over when they hear "Lewy body." They understand dementia to some extent, but they don't get that LBD is why mom can't figure out how to make soup anymore and why dad can't form an intelligible sentence. It's why their minds and their bodies will give out until they can no longer communicate with others, recognize others or understand what others are saying to them, toilet, care for, or feed themselves. And then they die.

What I'd like to help accomplish is to make LBD and the LBDA mean something clear and compelling, the way MD and MDA (muscular dystrophy and the Muscular Dystrophy Association) do. You think of the latter and you think of smiling kids with crutches, leg braces, and wheelchairs, you think of Jerry Lewis and the telethon, you think about giving. That's what LBD and the LBDA need, and it's all in the branding and what they can do with it. That's an ongoing project that will require a lot more thinking and collaboration.

The projects I've completed are a direct mail brochure targeted at neurologists to raise their awareness of LBD and invite them to download materials about LBD for their practice and their patients from the LBDA website; and an ad that will appear in the program book for the upcoming Pro Football Hall of Fame induction ceremony. The latter opportunity is very interesting. A guy named John Bankert worked his entire professional life (41 years) for one organization: the Pro Football Hall of Fame. He eventually became its executive director. A few years ago, he was diagnosed with LBD and had to retire. In March 2009, he died. So the LBDA negotiated a half-page ad to appear in the program. The message of the ad honors John for his long commitment to the organization, highlights the fact that only a disease as awful as LBD could make him step down from the job that he loved, and inviting readers to donate to a fund in his name.

Judy Carter, a very talented graphic designer and friend, generously agreed to donate her skills to the project. It's one thing to volunteer for an organization and do professional work for them on a pro bono basis; it's another thing to be the friend of someone volunteering and be willing to also waive one's professional fee to support the cause. I and the LBDA are very grateful to Judy for her excellent work.

Future projects will likely include grant writing and organizing (with the soprano) a benefit recital, as well as the branding initiative. Somehow, work doesn't feel like work when it's for a cause you believe in. It becomes invigorating, exciting, and motivational. The very act of helping out the LBDA has given me a newfound curiosity and commitment around this disease that prematurely ended by mother's life. I look forward to helping them until the day when the LBDA is no longer needed.

Until then, with these two projects in the can, I can hopefully get back to the novel.

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