We attended an Epilepsy Therapy Project board meeting this past weekend in Los Angeles. Naturally, on the way to the hotel after landing in LA, we stopped for a late lunch at this restaurant:
Next to Shake Shack, they have the best burgers around! Not to mention that their fries are superior (but, then, I’m not a fan of crinkle fries).
The board meeting was very productive. Faculty from UCLA who were working on various issues relating to epilepsy gave presentations on their research and clinical findings. Some real progress is being made, although we have a long ways to go, especially in getting potential new therapies out of the lab and into clinical trials and then to patients. The costs of clinical trials are prohibitive (in the millions of dollars) and the FDA is slow to approve new treatments. It can all be immensely frustrating for families who are desperate to have their loved ones’ seizures controlled with minimal side effects.
The most heartrending presentation I saw was a video on infantile spasms where a 16 year old girl is crying desperately for her mother as she suffers a bout of seizures. It was extremely difficult to watch.
Folks from the Epilepsy Foundation also joined us at the board meeting, as we are discussing a broader and deeper partnership with the Epilepsy Foundation that can further the research priorities of ETP and combine them with the support and advocacy functions at which the Epilepsy Foundation excels.
We also went on a SUDEP awareness walk (you can see the group gathered here):
SUDEP stands for Sudden Unexplained Death in Epilepsy. No one quite knows what happens, but some patients who suffer from epilepsy die suddenly with no obvious explanation. It’s not a well-understood or well-communicated phenomenon, and it is heartbreaking for the families, many of whom were never informed of this possibility.
One of the things that I have learned to do better from my time on the board at ETP is to put things in perspective. I cannot imagine the strength it takes for these families to cope with their loved ones’ seizures and the aftermath. It’s why ETP is so important to me, with its mission of getting more therapies to those suffering from epilepsy.