The Rasmussen Encephalitis (RE) Children's Project, a Darien-based foundation that supports scientific research to find a cure for this devastating neurological disease, announced that it will honor Rob and Marj Trifone at their third annual fundraising event, Turning Love into Power III, to be held on Saturday at Woodway Country Club.
"The Trifone's have been with us from day one and have supported my organization on so many levels. More importantly, as coaches, they have made a difference in the life of my daughter, Grace," said Seth H. Wohlberg, founder of the RE Children's Project, and whose teenage daughter was struck down by the condition in 2008. "Their leadership and willingness to support my efforts are examples for the community. The Trifone's are winners and have had a positive impact on so many young people in this community and are well deserving of this recognition."
Rasmussen Encephalitis is a rare neurological disease that causes intractable seizures, cognitive deficits and paralysis of half of the body. RE typically affects previously normal children between the ages of 2-10. The disease process typically runs its course over a 1-2 year period during which time one half of the body is rendered useless and epileptic seizures continue unabated.
An unusual feature of the disease is that it is usually confined to one hemisphere of the brain and is resistant to standard anti-seizure medicines. The only known "cure" is a surgical hemispherectomy -- the removal or disconnection of the affected side of the brain. Recent progress in understanding of the disease and the emergence of therapies that slow disease progression and help control symptoms has led some researchers to believe that more targeted and effective medical treatments are potentially within reach.
Marj Trifone is the girls swimming coach and a teacher at Darien High School. This past season, she coached the girls team to the coveted triple crown, which included winning the FCIAC, the Class L division and Connecticut State High School Championships. Marj has been a positive influence on Grace as she motivated Grace to get back in the pool following her life-altering surgery in 2009. This year, Marj invited Grace to be the manager of the girls team, easing Grace's entrance into the high school.
Rob is also a teacher and the high school football coach. He first met the Wohlberg's when he coached their son, Mike Wohlberg, during the 2008 campaign when the team went undefeated during the regular season. Coach Trifone has sponsored the "Lifting For Grace" event the last three years. "Lifting For Grace" features local football teams competing in the weight room to raise funds for the RE Children's Project.
In the summer of 2008, the Wohlberg's 10-year-daughter Grace started to experience epileptic seizures. After months of testing, her parents learned that she had the extremely rare neurological disorder. Grace underwent an initial hemispherectomy surgery in February 2009. However, her seizures recurred, so her parents then brought Grace to UCLA to complete the hemispherectomy which was performed by Dr. Gary Mathern in March 2010. Dr. Mathern will attending this year's fundraiser and will be a featured speaker.
Today, Grace is back in school readjusting to her new life with the assistance of a full-time aid. While the surgery has stopped the seizures, Grace faces lifelong disabilities that resulted from the surgery including partial blindness, cognitive issues and learning how to walk again.
The foundation has sponsored cross-disciplinary research conferences and funded leading edge research around the globe focused on finding the cause and an eventual cure for RE. The organization also supports research dedicated toward the recovery process following hemispherectomy surgery.
For information on purchasing tickets for the Turning Love Into Power III fundraiser to benefit the RE Children's Project, visit www.rechildrens.org.