We have been extremely busy this past week pushing forward on a number of fronts. During the first two years of the RE Children’s existence we avoided forming a scientific board to maintain our flexibility and to ensure that we attracted the widest participation in our deliberative meetings and research symposiums. We are approaching our second anniversary and now is the appropriate time to form a board of scientific advisors. Within the next week or so we will be announcing the initial members of our the board. This is quite exciting and a logical step in attracting and allocating funds for research. On another important front, we have identified an individual to be our research coordinator and hopefully will be announcing details within the next few weeks.
Grace’s bouts of headaches and dizziness have subsided for the time being. The random ebb and flow of these episodes is challenging to deal with. We have slightly modified her medicinal cocktail and added amytriptyline and reducing topamax. Amytriptyline also known as elavil is typically prescribed as an anti-depressant, but in smaller doses it used to treat and prevent migraine headaches. Topamax is an anti-convulsant and is also used to treat headaches, but it also has the side effect of cognitive impairment that is associated with many of the anti-epilepsy drugs.
In two weeks we are headed to the American Epilepsy Society’s annual conference in Baltimore. This is the largest gathering of epileptologists and neurologists in the world and we are planning to spend time with our friends in research as well as the other patient advocate organizations. This week we completed an important application that was submitted to the AES for an infra-structure grant to develop a patient registry. Patient registries are a hot topic of discussion in the rare disease movement. There is a cottage industry that has developed around patient registries and several diseases have attracted funding based on these sophisticated patient databases.
We are actively planning our February fundraiser that will take place on February 11th in Darien, CT at the Woodway Country Club. Last year we had 350 people fill the room to express their support of the RE Children’s Project and help us find a non-invasive treatment for rasmussen’s encephalitis. This year’s event is being managed by four talented individuals who are up to the task and have been supportive of Grace and our family as well as the RE Children’s Project. Many thanks to Laura Maier, Susan Graham, Tammy Taylor, and Susan Ballard the co-chairs of the event. Please stay tuned as we announce the details of the evening’s activities.
I would like to thank Alicia Sillars of the Darien Youth Commission for raising $230 at the TOPS Black and White Dance. This is a fantastic organization. Grace attends each of these dances and although Grace can only bop in place, she loves being in the mix and it is wonderful to see the kids support the RE Children’s Project. Every dollar counts.
Finally, last week Grace and I went to a local fundraiser for another cause that was sponsored by another great youth organization, Kid Helping Kids. Grace got a shampoo and blow-out for a great cause. We had a blast.