MEMORIES		FROM SUPPORT TO INVOLVEMENT

That my sister wished Mom's sacrifices toward a cure for carcinoid not be in vein, she launched the National Carcinoid Support Group late in 1996, considered the first such group extant in either the virtual or real world to provide information and collegial support for families immersed in a battle with the rare carcinoid cancer. During the course of extending this support, and the NCSG's tour of service, we all would find that carcinoid was not as rare as the medical world had thought.

Growing Pains and Getting Involved. Early in the life of Jean's support outreach through the NCSG, my sister enlisted a support board, ultimately consisting of people who were living through what our Mom had succumbed to: a cruel battle with carcinoid.

As this group began to grow, a vital discovery was made: the early beliefs of the medical community had grossly underestimated the presence of carcinoid in the Western world, much less its global presence. Early word from specialists was that the available sampling of carcinoid patients was simply too small to be able to glean meaningful results from testing the carcinoid community. They contended that the world population of carcinoid patients likely numbered no more than 200.

By late 1998, active interest of individuals and families fighting carcinoid (as it made contact with the NCSG) was in excess of 700. And growing almost daily.

My Opportunity to Contribute. At some point later that year, my skills at developing Web sites had grown enough to permit me to critique the NCSG site as built by Jean, an accomplished computer geek, but one with no active knowledge of HTML, the language of the Web. I offered to help.

About that time, a major member of the NCSG board was losing her fight with carcinoid. After her passing, I was offered an opportunity to fill that seat and take over the Web site. Having underperformed in providing any significant active support during most of my Mom's struggle, I felt it was the least I could do.

I launched into a redesign of the site soon thereafter, preparing a fresher version for the spring of 1999. This became a reality, despite its coinciding with a new challenge that entered my own household: although both in our 40s (and my wife hampered by bipolar disorder and me, an often blind-with-denial, out-of-shape glutton), we were about to have our second child, one born with another rare disorder, this one congenital: Apert Syndrome. (And to think that I complained about having bad sinuses.)

At least now, when responding to e-mails at the Web site, I would have little problem relating: my Mom died from the same rare disease they were e-mailing about, and my new son was facing a lifelong challenge with yet another rare affliction.

THE REFLECTION CONCLUDES

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