New Informational CD Developed by Pittsburgh-Area Man Now Providing Help to Physicians and Rare Disease Patients Around the World - FAQ, advises, how-to, reviews, selections, online sales

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New Informational CD Developed by Pittsburgh-Area Man Now Providing Help to Physicians and Rare Disease Patients Around the World A Pittsburgh-area man has developed and published a CD that’s now helping patients with autoimmune disorders around the world find help, information and hope. Thanks to Ed Becker of Valencia, patients with vasculitis, Polyarteritis Nodosa (PAN) and other related diseases now have access to wealth of information that was previously difficult to uncover.

The CD, which contains an extensive amount of information and hundreds of Internet resources, was created specifically for patients and physicians who need more information about autoimmune disorders but can’t easily locate it. Available since earlier this month, more than 80 CDs have already been sold. The price is $10 per CD, which covers the cost of duplication and postage. If not for having to recoup those costs, says Becker, he’d be happy to just give them away, knowing that they’re helping people.

It’s the culmination of seven years of Becker’s intense, self-motivated volunteer efforts following the untimely death of his mother in 1998 from Polyarteritis Nodosa. At the time of her diagnosis, doctors told him that the disease was rare and often fatal if not treated aggressively and early — and that not much was known about it. Quickly, Becker began searching in libraries, bookstores and on the web for information that might help save her life, but came up virtually empty handed. Within weeks of her diagnosis, his mother succumbed to the disease.

A Seven-Year Effort
In his mother’s memory and in his free time, Becker — a web site designer at Mellon Financial’s downtown Pittsburgh headquarters by day — created a simple web site on his home computer. Seated night after night, literally at his kitchen table, he posted what little information about he’d been able to glean from his own research into autoimmune disorders. Soon, the site began attracting patients, their family members and several medical specialists who, like him, had been looking, without much success, for more information.

Becker began scheduling weekly online chats, and before he knew it, his simple web site had evolved into an online community, with people regularly checking in from around the world and sharing the bits and pieces of information they’d been able to uncover about autoimmune diseases. "I realized the site had taken on a life of its own when prominent physicians from such institutions as the Mayo Clinic and Johns Hopkins University Medical Center began to see the value of such a group," he says. At that point, Becker gave his initiative a formal name — the Polyarteritis Nodosa Research and Support Network (PRSN).

After standing back and realizing how much information he’d collected about autoimmune disorders, he started discussing with a member of his community Birgit Wiedenmann-Naujoks, a multimedia designer in Hamburg, Germany whose mother had been diagnosed with PAN the possibility of publishing the information on a CD that anyone could own. They created a demo version that was released in 2003 in a limited run. The just-released 2005 version contains much more information, and may be the most comprehensive resource available for information about autoimmune disorders.

"It’s a true collaborative effort to which many have contributed," he says. "From the online community members who have contributed valuable information to all the physicians who support and endorse it, to Birgit and me, who had the skills necessary to create the final product."

Since introducing the initial version of the CD, Becker has filled more than 100 orders for the CD, and the orders continue to arrive. He’s also donated copies to Northland Library, and is talking with other libraries and resource centers about making it available as well. It’s been applauded and endorsed by the medical community and patients as a comprehensive resource that has long been needed. Anyone is welcome to order the CD at www.pansupport.org.

Becker also serves as the PRSN Representative on the steering committee of the newly created Vasculitis Clinical Research Consortium (VCRC) headed by noted rheumatologist, Dr. Peter Merkel. Vasculitis is one of about 20 rare autoimmune disorders addressed by Becker’s support network. The VCRC membership includes highly respected medical experts, mainly rheumatologists, in the autoimmune disease field, including Gary Hoffman, MD, of the Cleveland Clinic; Peter Merkel, MD. of Boston University; John Stone, MD, of Johns Hopkins; and Eric Matteson, MD. of the Mayo Clinic (who has authored three books on PAN). The mission of the VCRC is to promote research into vasculitis by working closely with patient support groups such as Becker’s PRSN.

Becker led a panel discussion on PAN at the 2004 Wegener’s vasculitis conference. Moreover, he has represented his organization at numerous medical symposiums and conferences. Most recently he attended a Congressional hearing on increasing funding for autoimmune disease research in Washington,D.C.

Ed Becker is available to discuss the CD and the mission and history of the Support Network.

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