JeffreyandAlicia Mantz wrote -
OMS is a very rare neurological disorder that affects approximately 1 in 10 million people. While it can develop in both children and adults, it most often strikes children under the age of 2. Due to its rarity, not much is known about OMS and diagnosis is often delayed, with it initially being mis-diagnosed. There is no cure for OMS though it can often be kept under control with treatment and medication.
This fundraiser is designed to raise money to support research of opsoclonus myoclonus syndrome (OMS) at Boston Children's Hospital, one of the premier medical facilities for children in the United States. Research in OMS is headed by Dr. Mark Gorman, head of the nuero immuniology program for the neurology department at Boston Children's Hospital. Dr. Gorman recognizes the many shortcomings in diagnosing and treating OMS and is dedicated to working towards improving patient diagnosis and treatment.
This was started by the parents of Lauren Mantz who created The Lauren Mantz Fund for OMS Research at Boston Childrens Hospital. In 2009 Lauren was diagnosed with OMS after several months of being mis-diagnosed with cellerbellar ataxia. We later learned that so little is known about OMS that many children who have it were also being mis-diagnosed initially. This initial mis-diagnosis results in a delay in obtaining the correct diagnosis and proper treatment. Research has shown a correlation between early intervention results in a better recover, less patient suffering, and reduced chances for long term damage to the brain. It is our goal to not only spread awareness of OMS, but to assist if help doctors such as Dr. Gorman find way to improve outcomes for future patients. Today Laurens OMS is under control with the use of medications with the hope that it may one day go into remission.
We raise money for OMS research in 2 ways:
- We host a local event in Ocala, FL every spring called a Mother-Son Dance. All proceeds of the event are donated to Boston Children's Hospital and specifically put aside for OMS research. Details of this event can be found at www.littlelauren.org.
- We ask for monetary donations to be made to Boston Childrens Hospital to support OMS research through this fundraising site. We have worked with the hospital to coordinate that all donations made here do get speficially used for OMS research.
Your help to support this cause is needed and any amount you can donate, no matter how small, is appreciated. This is important to not only all who suffer OMS but Lauren herself has taken a partucular interest in helping raise money for OMS research herself. A great example to help put it into perspective, Lauren decided to forego birthday presents at her recent 7th birthday party with her friends from school and instead requested they bring donations for OMS research. This was not something prompted by anyone. Lauren came up with the idea on her own. We hope you share Lauren enthusiasm in helping support OMS research and improve outcomes for those who may develop OMS in the future.