Dear Friends,

Thank goodness that spring is upon us in the Midwest. We’re relieved to get past the long winter and on with our fundraising events for the 2009 year.
These are much needed activities that provide revenue to operate our organization while at the same time creating awareness of Parry-Romberg Syndrome. In fact, we have distributed over 300 informational brochures in the past year through these types of events.

May 2, 2009
The Run for Awareness / PRS
Eight runners representing Parry-Romberg Syndrome Resource, Inc. will participate in the Indy 500 Mini-Marathon. Each has collected pledges toward their run which will support surgical costs for patient Donna Wyatt.

Brochures about Parry-Romberg Syndrome including the initial symptoms of the disease will be distributed at the race.

June 11, 2009
Golf outing in Indianapolis at Maple Creek Country Club
Fifty or more golfers will play in support of our organization’s efforts while competing for area restaurant gift certificates.

August 2009
Volleyball tournament at Five Seasons Sport Club
This was a real success in every way last year. This is friendly competition that brings out lots of fans and provides a great outlet for distributing information about PRS.

Parry-Romberg Syndrome Resource, Inc. will celebrate its first year anniversary in May. We reflect proudly on the progress we’ve made toward our initial objectives; education and awareness. Our organization is listed as a patient referral source with the following national organizations:

• National Organization of Rare Diseases
• Society for Pediatric Dermatology
• Scleroderma Foundation
• The National Human Genome Research Institute
• and the Office of Rare Diseases Research at the National Institutes of Health.

We look forward to a great spring and another productive year!

Crystal McDowell
Bryan McDowell