DONATIONS

DONATIONS TO SUPPORT RESEARCH ON PEDIATRIC OPSOCLONUS-MYOCLONUS SYNDROME, SHOULD BE MADE OUT TO THE NATIONAL PEDIATRIC MYOCLONUS CENTER, A NON-FOR-PROFIT ORGANIZATION. PLEASE SEND YOUR CHECK TO:

Michael R. Pranzatelli, M.D.
Department of Neurology
P.O. Box 19643
Springfield, IL 62794-9643
217-545-7635
217-545-1903 FAX

Why Do We Ask for Donations?

Many parents think that the government or the hospital or somebody somewhere will eventually find a cure for OMS and they need not take an active role. They think that the money they pay for a clinic visit, laboratory or hospital bills, or treatments somehow funds OMS research. Nothing could be further from the truth.

OMS is low on agency priorities. The only money that funds our OMS research is the money from grants we write, based on data we collect and research we do, and from parent donations. All of our research staff must be paid out of those funds: answering your phone calls and emails, communicating with your local doctors, writing letters on your behalf, and coordinating and monitoring treatments for your child. Our team performs hundreds of these duties a week. We receive nothing from the hospital or the university to cover these costs.

Keeping the center afloat for 20 years has been a constant challenge. Even with our fair share of grants and an excellent grant track record, there have been times we thought we would have to close. Research is very expensive, especially the kind that needs to be done in OMS. Federal funds for research are at an all time low. Only 9-10% of grant applications to the NINDS branch of the National Institutes of Health are eventually funded after two to three passes. Fifty percent of grants from qualified investigators are triaged and categorically dismissed. Most successful researchers must have a combination of diverse sources of funding to survive.   

I have to admit, had I known all the work and sacrifices involved in doing research on OMS, I might not have gotten involved. Like me, few physicians get to do research full time. I have to see hospital and clinic consults, take call, teach medical students and residents, dictate charts, advocate for families in disputes with insurance companies, and do administrative work. Any time I am allowed to do research must be earned. I have always tried to make time for OMS research, but the demands on university professors have increased. The writing of most manuscripts and grants comes out of my personal time. If I could do OMS research full time, we would advance by leaps and bounds.

OMS research must be a partnership between researchers and families of children with OMS. No one else cares about OMS. When you find researchers willing to help your cause, don't let them run out of research funding or lose their interest in always fighting for funding. Support them. If the lights go out at our center, it will set the field back many years.

We would like to express our appreciation to the following families (listed alphabetically) for their donations of $500 or more or successful fund-raising efforts:

Bob and Kim Brenengen and The George L. Shields Foundation
Karen M. Brewer
Richard L. and Susan J. Brewer
Brendan and Brenda Brosnan
Peter and Sandra Cappas
Brian and Eileen Couri and The CINN Foundation
Ann S. Fay
Patricia B. Fay
Kory and Rory Hunter
Gigi Jordan and Pridecare, Inc.
Ms. Traci King and Ms. Jill King in Honor of Mr. Reid Nelson
Sallie Mae Fund
Robert McGreevy
Fred and Emily J. Osburn
Joseph and Elizabeth Pearl
Jack L. Pittsley
Steve and Donna Pittsley and Friends of Allison Pittsley
Elizabeth A. Rummel Trust
David and Barbara Salamon
Frederick and Kathryn Snyder
Robert L. Trimpl
Tony and Patty Tzoubris

We do encourage families to raise funds in any way they can. Perhaps you are more comfortable with a bake sale, sponsoring a race, soliciting from co-workers or church members, or selling t-shirts.