Summer 2008
Leaping into the world of Non Profit business is fate at its best. This was a decision based on years of searching out information in an unfamiliar arena of medical terminology and specialists. The internet as my tool has become a blessing by providing clues to a disease that is rare, and unpredictable.
In 2001, my son was diagnosed with en coup de sabre which meant very little to us. Just the fact that the line running down his forehead had a name and that the doctor diagnosing him hadn’t any information to provide us, came as a shock. The doctor’s parting words after the diagnosis were not totally comprehended until we arrived home, “The internet will provide more information than any other source.” Looking back after all this time, I wonder if she even realized that basically she’d sent us out into the dark.
Speed ahead to 2008 and what we’ve copied, cut, pasted, and forwarded to our doctors and others, brings us to the place we are today. Together, my son, a board of directors and myself have united to support those with Parry-Romberg Syndrome. We’ve realized the need for educating the medical communuity and bringing about awareness of this disease. Our organization, Parry-Romberg Syndrome Resource, Inc. has set forth the following objectives:
- Inform medical professional of physical symptoms of PRS which will enable earlier diagnosis and treatment.
- Provide documented professional medical information to Parry Romberg patients and families regarding successful treatments that may inhibit the disease progression.
- Communicate with the medical community the need for research of PRS.
- Report documented professional medical information to Parry-Romberg patients regarding studies of the disease.
- Provide funding for research.
- Provide possible cosmetic resources.
Stay tuned for more information to be added to our site throughout the year and please feel free to contact us with feedback and information.
Sincerely,
Crystal McDowell