This past week we had a conference call with our genetics research team. We held the call at 5 pm, a convenient time for our friends on the west coast as well as our friends in Australia. Leading the call were the following individuals:Dr. Chris Cotsapas, Yale University School of Medicine Dr. Ingrid Scheffer, Royal Children’s Hospital Melbourne Dr. Gary Mathern, UCLA Dr. Carlos Pardo, Johns Hopkins
The group decided to move forward with a novel and collaborative project to sequence the DNA of 20 families, each with a child with rasmussen’s. This type of research would not have occurred without the RE Children’s efforts to collect tissue and our initiatives to foster collaboration. The plan calls for sequencing the DNA of the parents and the child. The initial grant will be for $50,000. We could not have done this research without your financial support.
Since 2010 I have been working to advance research into rasmussen’s encephalitis. In short years we have accomplished a great deal starting with our Deer Valley research symposium, the hiring of our research coordinator, and more recently our efforts to collect RE tissue. That said I have come to realize that RE is part of a larger family of rare seizure disorders, each of which requires more awareness and funds for research. In order to elevate the global profile of RE as well as the rare epilepsies, I have joined the Board of CURE.
Since its inception in 1998, CURE has raised more than $20 million to fund research and other initiatives directed toward finding a cure for the epilepsies. CURE funds seed grants to young and established investigators to explore new areas and collect the data necessary to apply for further funding by the National Institutes of Health (NIH). To date, CURE has awarded 134 cutting-edge projects. With your support I will continue my personal fight for a cure for rasmussen’s, but now with renewed vigor and support as I work with my fellow warriors at CURE led by my friend, Susan Axelrod, one of CURE founder’s and the parent of a daughter with epilepsy.
Grace has entered High School and one of Grace’s mentors, Marj Trifone, has come through again. Marj is the Girls Team Swim coach and is the person responsible for getting Grace back in the pool and enjoying swimming the way she did prior to her surgery. Marj recently asked Grace to be the manager of the swim team and Grace gladly accepted the invitation. She is now part of the team, attending the practices when she can, their meets, and related events. Below are some pictures from a recent car wash to raise funds for the team. Thanks to Marj and Rob Trifone for all that they have done for my family. Go Blue Wave!