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| Irene Goodman and her son, Rob. Photo courtesy of Irene Goodman |
For Irene Goodman, having her five-year-old son, Rob, develop mild hearing loss was hard enough. Fifteen years later, when Rob began to experience vision loss as well, it was "the shock of our lives," she says.
The diagnosis was a genetic disorder, Usher syndrome, which resulted in the visual impairment retinitis pigmentosa, combined with hearing loss due to a problem in the cochlea. Vision loss advances as a person ages, often leading to legal blindness. The severity of the hearing loss ranges from mild to profound.
The dual impairment of two major senses and progressive worsening of the condition presents an overwhelming challenge to a person with Usher syndrome. As dire as the prognosis appeared, Irene said, "No, we do not accept this, that there isn't anything that can be done." When Rob's hearing loss was first discovered, the Goodmans were told that their hope would be found in technology: Better hearing aids could ameliorate his hearing loss, but it was unlikely that there would be a medical cure for it. However, Irene points out, now there are cochlear implants, something that no one imagined when Rob was a child. Irene is further encouraged by research, such as that of Stanford University's Stefan Heller, Ph.D. A former Deafness Research Foundation (DRF) grantee and member of DRF's Council of Scientifi c Trustees, Heller and his colleagues have shown that primitive stem cells can be coaxed to grow into mature hair cells. Eventually such stem cells may be implantable into the inner ears of deaf people to restore hearing. Heller envisions that substantial progress in this direction will be made in the next decades or, as Irene says, "within Rob's lifetime, if not mine."
Strides are being made in researching genetic vision loss, too. Irene is cheered by a gene therapy clinical trial that researchers plan to launch this year, and another treatment that has just passed clinical trials.
As reassuring as these developments are, the Goodmans are not content simply to sit idly by and wait for a cure. Irene recognized that this kind of research costs of lot of money. Thus was born "Irene's eBay auction."
A successful and accomplished literary agent for the past 25 years, Irene is sought after by authors seeking access to a publisher. When she attends writers' conferences, she is often asked to donate a manuscript review that can be auctioned off to raise money to offset conference expenses. So Irene decided to take the manuscript-review auction idea and use it to raise funds for hearing and blindness research.
In December 2009, Irene auctioned off professional manuscript reviews using the Internet auction site eBay.com, with the proceeds going directly to DRF and the Foundation Fighting Blindness. News of the upcoming auction spread throughout the writing community via Web sites, blogs and Twitter alerts. eBay policies do not allow for more than one winning bidder in each auction, so Irene conducted 25 separate week long auctions. When it was over, she had raised $15,000. "That's just the tip of the iceberg," she says. Thrilled with the success of the auctions, she plans to repeat them monthly and has added a third to benefit Doctors Without Borders in their efforts to provide aid to victims of the recent catastrophic earthquake in Haiti.
Meanwhile, the Goodmans cope with Rob's condition. Her son lives in the moment, Irene says, doing the best he can. "We don't dwell on a doomsday future," she says, outlining the Goodmans' two-part plan. Part 1 is to cope and make the best of it. Part 2 is to work for a brighter future.
For more information about Irene Goodman's manuscript-review eBay auction, visit www.irenegoodman.com/ebay.php.
