As of January 1, the Epilepsy Therapy Project and the Epilepsy Foundation merged and became one organization, the Epilepsy Foundation. The first board meeting of the new organization was held this past weekend in Miami. Jim and I flew down on Friday afternoon and participated in the tail end of the Anti-Epileptic Drug and Devices conference (AEDD). The board meeting was Saturday. All of the board members that were ETP board members were old friends, of course, and it was wonderful to see them again and catch up on their lives. It was also equally lovely to meet the board members that I didn’t know—those from the original Epilepsy Foundation. In a moment of insanity/weakness, I agreed to become Secretary of the Board. (It really is impossible to say no to the CEO of the Epilepsy Foundation, Phil Gattone. It gives him a most unfair advantage.)
The Epilepsy Foundation combines the missions of ETP (supporting research into promising new therapies for epilepsy) and the Epilepsy Foundation (improving the lives of people with epilepsy).
The board meeting was both uplifting and sobering. Sobering because there is still such a lengthy journey to go before all those suffering from epilepsy can control their seizures without significant side effects. Uplifting because of all those folks, both on the EF board and otherwise, who are both passionate and dedicated in their mission to help those suffering from this debilitating disease.
Please see www.epilepsy.com for more information.
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.
I attended the 2012 Epilepsy Pipeline Conference in San Francisco held February 2-4 and sponsored by the Epilepsy Therapy Project. It’s a conference attended by venture capitalists, epileptologists and other medical professionals, and business people, all of whom are interested in new developments and research in the world of epilepsy. There were presentations about the latest drugs and devices in the pipeline. (Although who knows if the FDA will approve any of them, but that’s a topic of discussion for another time.) For the first time, we also held a “Shark Tank”-type competition where six different folks pitched their ideas to the audience and a panel of experts for a $50,000 grant. Each person had 3 minutes to make their pitch and then another 7 minutes of questions from the panel and the audience. Each panelist voted for their favorite applicant, and the audience texted in their votes, and the audience winner was awarded 2 votes. The grant was awarded to Charles Anderson for a seizure detector iPhone app. All of the presentations were terrific, but I think those who voted for Charles Anderson felt that the $50,000 grant would have the most impact on the development of his invention. (Plus, the app will be very cool!)
It was also really lovely to see some folks that I haven’t seen in a while. Amongst others, my best friend from high school (we’ve been friends since 4th grade) was also there, as she is an epileptologist in Denver at the Children’s Hospital there. We made sure we grabbed a meal in Chinatown, at Henry’s Hunan Restaurant and had dinner together as well, as we caught up on what was going on in each other’s lives.
Then, it was off to Hawaii for another conference, but that’s a subject of another blog post.
The Epilepsy Therapy Project was founded in 2002 by 3 parents of children with epilepsy, and its mission is to accelerate ideas into therapies for people living with epilepsy and seizures. About 1% of the population suffers from epilepsy and about 40% of that population cannot control their seizures with existing treatments. Many others suffer from significant side effects with the drugs they are taking to control their seizures. ETP is addressing the funding gap that exists between the development of promising ideas in the laboratory and the funding of clinical trials of successful therapies. ETP provides not only financial assistance for researchers and startups with possible new treatments for epilepsy but, with the able assistance of its Scientific Advisory Board and Business Advisory Board, provides scientific and business advice to those organizations as well.
I was Executive Director of ETP for almost 3 years and am now on its Board of Directors. I have an uncle who suffers from epilepsy, and the “cone of silence” that surrounds people suffering from epilepsy and their families makes the disease even more hurtful.
In today’s regulatory environment, it has become increasingly difficult to have any new therapies approved for any disease. It is all the more important for organizations such as ETP to champion the continuing research for new and better treatments for those suffering from this debilitating disease. See www.epilepsy.com and www.epilepsytherapyproject.org for more information.