Dear Friends,

After weeks of planning, the weather didn’t cooperate the day of our first Parry-Romberg Syndrome Resource, Inc. Golf Outing on June 11.  The date has been rescheduled for September 24 and registrations are still being taken. We have great prizes including several sizeable gift certificates from Ruth's Chris restaurant and AWESOME looking first place trophies.

Recently, we were contacted by the Discovery Channel for consideration of the show Mystery Diagnosis.  This is a documentary television series that tells the stories of those afflicted with unique and difficult to diagnose diseases and conditions. The show chronicles the (often arduous) road to diagnosis and the emotional journey that accompanies it.  We are thrilled at the possibility of Parry-Romberg Syndrome being highlighted in an episode.  Patients with PRS can contact the show’s producer, Lee Doyle at 212-763-3663 or email Doyle@trueentertainment.net.  A questionnaire detailing a patient’s journey and difficulty with diagnosis is available by contacting us at prsresource@comcast.net .

The Scleroderma Foundation has announced a new registry for those diagnosed with Morphea.  If you have questions about this study, contact Heidi Jacobe, M.D. at christina.carrigan@utsouthwestern.edu or http://www.utsouthwestern.edu/utsw/cda/dept25717/files/384413.html . A family registry is also available titled, Scleroderma Family Registry and DNA Repository http://www.scleroderma.org/medical/SD-Registries/SD-Family-Registry.shtm .

Over the next 6 months, our organization will be mailing Parry-Romberg Syndrome brochures along with the Initial Symptoms Survey to pediatricians’ offices across the Midwest.  We have made it our mission to educate the medical community and the public about PRS.  It is our hope that this continued effort will bring about awareness and early diagnosis.

Take care,

Crystal McDowell