Dear Friends, 

What a wonderful year it has been!  As we close out the old and bring in 2009, our calendar fills with new fundraising events and presentations which educate the medical community.  Bryan has formed a team of 10 runners to participate in the 500 Festival Mini-Marathon during the Month of May in Indianapolis.

These athletes will represent Parry-Romberg Syndrome Resource.  From Jan. through May they will gather financial pledges toward their run for the purpose of creating awareness of PRS and to also help a needy, uninsured PRS patient. 

On Jan. 22, our medical community presentation takes place at Clarian Hospital, Indianapolis.  Information regarding initial disease symptoms for early diagnosis, individual case reports, and possible treatment options will highlight this event.  If you are affected by PRS and would like to attend or participate, please contact us. 

One question often posed to us regarding types of doctors most suitable for treatment of PRS, deserves attention at this time. Recently, we consulted with several specialists regarding this topic.   All seem to regard a rheumatologist as the best fit although a dermatologist in a clinical setting could be as useful.  The rheumatologists familiarity with scleroderma treatment lent itself to that medical field with PRS.  

We continue to search for new information on research.  Posted on our Studies page is research by CARRA which is recruiting patients with localized scleroderma often overlapping with PRS.

We look forward to hearing from you and appreciate all who have contributed to our site.

Sincerely,
Crystal McDowell
Bryan McDowell