About Us

The OMSLife Foundation is a 501(c)(3) nonprofit organization founded in 2012 dedicated to educate people around the world about Opsoclonus Myoclonus Syndrome and raise funds for the research and cure of this disease.

The OMSLife Foundation,   P.O. BOX 2899,   Cypress, TX   77410

 

 

January 27, 2013

 

The OMSlife Foundation is pleased to announce the results of our fourth annual OMS Teddy Bear Drive.  Local coordinators distributed over 3,300 new teddy bears and toys to children in 32 hospitals across the country to raise awareness of OMS.  Also, our goal to raise $25,000 for OMS research was exceeded as we collected $43,800 from 280 personal and corporate donors. 
 

As communicated previously, the 2012 grant recipients were:

  • Dr. Michael Pranzatelli, The National Pediatric Myoclonus Center, Springfield, Illinois.
  • Dr. Mark Gorman, Boston Children’s Hospital, Boston, Massachusetts.
  • Tony Tzoubris, Pediatric OMS Research Fund, Chicago Illinois.

 

Each grant recipient received $14,600 for OMS research and related work.   Boston Children's Hospital notified us that a philanthropic match was offered on our donation, and our board of directors has approved, a matching gift on a one for one basis, raising the total for their OMS research to $29,200.

 

Congratulations to each of our 2012 grant recipients.  A special thank you the many teddy bear coordinators across the country and to the generous contributions from everyone who participated in our 2012 OMS Teddy Bear Drive!

 

 

 

September 10, 2012

Student aims to find cure for disease, a teddy bear at a time - Kentucky Kernal

 

 

 

August 9, 2012

 

The OMSlife Foundation is pleased to announce that we are now a 501(C)(3) organization eligible for tax deductible donations. The OMSlife Foundation was founded with a mission to raise OMS awareness in the general public and the medical community, to raise funds for OMS research, and to assist families in their battle of OMS.

 

The board of directors of The OMSlife Foundation has elected to direct the monetary proceeds collected from the Fourth Annual OMS Teddy Bear Drive to the following recipients:

  • Dr. Michael Pranzatelli, The National Pediatric Myoclonus Center, Springfield, Illinois. Dr. Pranzatelli has been instrumental in progressing research in OMS for over 20 years. Through his research, he has helped hundreds of children around the world enjoy a higher quality of life.
  • Dr. Mark Gorman, Boston Children’s Hospital, Boston, Massachusetts. Dr. Gorman, through collaboration with OMS researchers and doctors worldwide, has embraced the approach of holistic treatment of OMS. He has aligned a team of experts of varying disciplines to assist families in addressing issues with oncology, neurology, physical, speech, and occupational therapies, nutrition, and school placement and programs.
  • Tony Tzoubris, Pediatric OMS Research Fund, Chicago Illinois. Tony, in his collaboration with The Dancing Eyes Syndrome Trust in London, England, has been a leader in bringing the OMS medical community together. With Tony’s assistance, this group has hosted multiple OMS medical conferences with leading OMS experts from around the world, enabling collaboration at a greater level than would normally occur for a rare disease.

 

We applaud the contributions that these three individuals and their organizations have done to progress the collaborative efforts in research, treatment, and life skills for our OMS warriors. Congratulations to the recipients of the 2012 recipients of the Annual OMS Teddy Bear Drive Fundraiser.

 

 

 

 

 

The OMSlife Foundation Board of Directors

 

 

  • William Bradley
  • Billy Enochs
  • Rebecca Gallant
  • Hank Holley
  • Becky Jennings
  • Michael Michaelis
  • Shallie Olivieri
  • Evie Sanchez