Dear Friends,

It may only be January, but it’s time to get ready for the One America Five Hundred Festival Mini-Marathon to be held in Indianapolis on May 8, 2010.  Presently, we have 12 participants in training as they prepare for the 5K walk and half marathon.  Our supporters will pass out informational brochures and wear t-shirts which boldly communicate our message of the need for early diagnosis, treatment, and research needed of Parry-Romberg Syndrome.

A message from NORD highlights Rare Disease Day, Feb. 28, 2010:

Please Join NORD in Promoting World Rare Disease Day

As the U.S. sponsor of Rare Disease Day, NORD has been working with the European Rare Disease Organization (EURORDIS) and others around the world to plan Rare Disease Day 2010, to be observed on February 28.  Patient advocates have obtained proclamations in honor of the day from governors of six states to date.  Approximately 300 patient organizations, government agencies, and companies have signed on as Rare Disease Day Partners, which means they support the spirit of the day and will promote awareness of it.  The U.S. Social Security Administration has signed on as a Partner, as have the NIH Office of Rare Diseases Research and FDA Office of Orphan Products Development.  NORD has created a U.S. Rare Disease Day website.

Many thanks to all who support our efforts!  We encourage those with PRS to get involved and educate others!

Sincerely,

Crystal McDowell

"In the final analysis, the questions of why bad things happen to good people transmutes itself
into some very different questions, no longer asking why something happened, but asking how we will respond,
what we intend to do now that it happened."

~Harold S. Kushner~