On March 13th, the annual Lifting For Grace fundraising event will take place in our home town at Darien High School. The event is focused on raising awareness for Rasmussen’s encephalitis as well as funds for our research programs devoted to this rare epilepsy syndrome. Head Coaches Rob Trifone, Darien and AJ Albano of Brien McMahon High School bring their teams together to compete in the weight room to raise funds for the cause. Individual athletes can be sponsored or donations can be made through our website. The Lifting Grace event was initiated several years while we were in Baltimore when Grace had her first brain surgery. Below are pictures from the previous events. Many thanks to Coaches Trifone and Albano for continuing this inspirational event.
We continue to help families in every corner of the world cope with RE and navigate the difficult and desperate circumstances that are part of this devastating disease. Unfortunately, many doctors around the globe are not experienced in treating RE which complicates the plight of many families. It is essential that families impacted by RE maintain complete medical records in case second opinions by more experienced doctors are warranted.
We continue to make progress in our efforts to expand research into Rasmussen’s. Within the last few weeks we have been in contact with Beijing Sanbo Brain Hospital, China as well as the University Hospital Muenster, Germany who have expressed interested in participating and collaborating in our research programs. We will soon be funding a follow-up study to one that analyzed samples from RE patients in detail and found evidence for a pathogen (e.g. a virus) that potentially triggers an adaptive immune response causing the damage in the brain. Additionally, we are exploring a potential funding for a ground breaking rehabilitative study by Columbia University’s Center for Cerebral Palsy Research that would focus on hemispherectomy patients. Finally, there are several other research projects that are showing promise including one that is focused on developing a mouse model that will need funds later in 2015.
Please take advantage of the Lifting For Grace event to express your support for our efforts. Stay tuned for more information on the event. Thank you.