I got back from Europe (and my short stint in Chicago visiting Seta) a week ago but this is the first chance I've had to write about it. I've been working my buns off you guys! This auction that I have coming up is a real biggie.
The conference was about 15 minutes outside of Oxford. It was a bit of a bummer because I didn't get to see any of Oxford. The entire conference was held at one location, in the middle of the country. It may not have been exciting but you couldn't deny the peaceful, beautiful setting, the gorgeous landscaping, and the stately 18th century architecture.
The on-site bar, the Gun Room, also recently won a European award of design. It was super cute -- very Kelly Wearstler.
Okay, now on to the important stuff.
Fifty-seven people attended the summit. I would say that maybe a quarter of them were LAM patients or their husbands (or family members, like me), maybe half were researchers, and then a few were from various research or medical-type organizations. I was astounded at how well the conference was organized. It was so professional and so efficient. This is no small feat when you have 57 people who speak different languages in one room. But they managed to keep on schedule and accomplish whatever they wanted to accomplish in each session.
The days were long. I sat in session after session. But I learned some really important information about LAM research.
The LAM Treatment Alliance (LTA) had two primary goals for the summit: 1.) To facilitate a global tissue procurement program, and 2.) To facilitate a global database of LAM patients.
I had no idea that both issues were so crucial to undertaking research in an efficient and effective manner. I was astounded to learn that before Amy Farber (LAM patient and founder of LTA) came on the scene, newly funded researchers were taking up to one year from funding to get their hands on tissue to study. In her words, "One year with LAM is like a lifetime." She felt this time line was unacceptable (as would anyone with a brain and a will to live) and she has managed to reduce that time period to a matter of weeks (keep reading to find out how).
It makes me frustrated to hear this type of information - that it took this long for something that crucial to be resolved. I know this is an orphan disease but I still think that if there's an organization out there rallying for LAM patients and a cure, the least they could do would be to get their tissue procurement situation up to par.
The LAM Treatment Alliance has partnered with the National Disease Research Interchange (NDRI), a national organization that distributes tissue and organs all over the country (and world), and they are now getting tissue out in a much more efficient manner. Other continents currently lack a coordinated tissue procurement/distribution program, but at the conference, LAM representatives in Europe decided to partner with NDRI to undertake a LAM tissue program. This is great news!
A global database is another stop gap to research. Currently, each country or region has their own registry of LAM patients. These registries might have 4 patients in it, or 400, but the problem is, researchers can't access all of them -- and even if they could, they have no efficient way to synthesize information. Currently they could not tell you how many LAM patients in the world have an FEV1 below 47 -- so how can they design a trial and enlist the appropriate patients?
The LAM Treatment Alliance has partnered with MIT's Media Lab to build a global web-based database. It's so wonderful that they have the connections and know-how to establish partnerships with such powerful organizations.
Perhaps the best news of all is that The LAM Treatment Alliance was recently awarded a multi, multi million dollar grant from Harvard -- more than double the cumulative amount raised in the last decade.
I loved how their organizational mindset (which carries through to everything they do) is, "If money were no object, what would we do?" I've never really come into contact with a nonprofit organization that thinks like this. It really inspires smart decision making, instead of actions determined out of a mindset of scarcity.
I did not learn about treatment trials in the near future, which I was pretty bummed about. But I did learn about some exciting new science, and I'm sure this will translate into really promising trials at some point.
I didn't have time to see London but I did somehow find the time to make it to Top Shop, where I got a great new navy blue double breasted wool sweater jacket thing. It's hot.
I also had a great time in Chicago with this lil' sweetie. Seta is so cute!
And, while I was in Chicago, I went to the brick n' mortar Jayson Home & Garden, which totally surpassed my expectations. It's great.
That was my trip in a nutshell. Sorry for the long post but so many of you have been asking me, and my blanket reply has been "It's complicated, but I will be summarizing it in an e-mail or blog soon." So there you go.