Fall 2008
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| Crystal McDowell, Development Coordinator |
Dear Friends,
The past six weeks have been a busy time for us at Parry-Romberg Syndrome Resource, Inc. As we forge ahead with establishing our organization, we’re constantly reminded that patience and fortitude are essential.
PRS is a rare disease and the search for information is often confounded by the overlapping symptoms, the low ranking interest of this particular dermatological unknown in the medical world and financial resources to enable research. Fortunately, we have many friends through the Romberg Connection that have bravely offered up their personal background with PRS by providing Case Reports for our website. Many others have come forth with information about the initial symptoms of the disease which were original markers for concern. This information will be compiled and posted on www.prsresource.com within the next 4 weeks.
Our volleyball fundraiser at Five Season’s Sport Club was a smashing good time! See photos on Events Page. Six teams competed for dinners at two popular Indianapolis restaurants and all participants gained new knowledge about Parry-Romberg Syndrome. Through this event, we were able to raise funds to assist with some of our initial operating costs and we brought some enthusiastic new friends on board to help us with our mission. We will continue to pursue avenues of financing as the year progresses.
Coming soon to our website……..Cosmetic Surgeon, Dr. John Siebert will be posting his surgical restoration experiences relating to Parry-Romberg Syndrome. Also, more Case Reports offering insights to the physical path PRS has taken.
We look hearing to hearing from you with feedback, questions, and fundraising ideas. Please write us at prsresource@comcast.net. Together, we can provide a voice for those suffering from Parry-Romberg Syndrome.
Sincerely,
Crystal McDowell
Newsletter archive by the Parry Romberg Syndrome Resource, Inc.