England

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.

Going to Oxford on Wednesday

As some of you may know, I am traveling to England on Wednesday. This past week – MONTH! – has been incredibly busy. It’s amazing that I am not even working a traditional 8-5 job at the moment and I still can’t seem get everything that I need to get done in a day. But I suppose that moving plus holidays plus Scottsdale plus work projects plus major event in February plus a trip to Europe sort of makes for a crazy couple of months.

In any case, I am going to London and Oxford on Wednesday. The circumstances for traveling to Europe could definitely be more exciting; I am going for a global research conference about LAM, the rare disease that my mom was diagnosed with nearly 6 years ago.

Organized by the LAM Treatment Alliance (LTA), a fairly new organization that’s fighting this disease, the conference will be at Oxford University from Friday through Sunday.

LTA has been working to build networks that support research globally. The 3-day meeting that I’m going to will work to identify concrete steps to ensure that patient coordination is working, and is helping to make research progress in the fastest time possible. How I am interpreting that goal is this: there are many things that need to be done to solve LAM, and patients need to be involved. Researchers need LAM tissue, they need access to LAM patients so they can track their disease, and they need to have willing subjects in which to introduce new drug treatments. LTA is just working to identify how this might work on a global scale, with less than 1,500 diagnosed LAM patients in the world.

Researchers are also going to provide updates on their clinical trials underway, and on ones in the pipeline. They will also talk about ways for LAM patients to coordinate with researchers and drug companies seeking candidates for drug trials.

This last reason -- drug trials -- is why I am most interested in attending the seminar. My mom has been on an experimental drug, Rapamycin (or Sirolumus), for over two years. While it has seemingly slowed her progression, it hasn’t come without serious complications. Most recently, her blood pressure and cholesterol have shot through the roof, sending her to the emergency room this past fall. She was also diagnosed with mild renal insufficiency, meaning her kidneys have been affected by the toxicity of the drug. Her physician took her off of Ramapycin for a month, and was somewhat reluctant to put her back on it. If the day ever comes where my mom needs a lung transplant, all of her other organs need to be very healthy in order for her to be eligible to receive new lungs.

Her physician, Dr. George Pappas at Minor & James Medical is a wonderful, caring doctor and we are so lucky to have him. He weighed the options and decided to put my mom back on the drug but at a lower dosage. I think that she has been feeling the effects of a lower dosage – her breathing has been a bit tougher lately. All of this is motivating me to seek new treatments for her, and I’m hoping that this conference unveils some new hope on the horizon.

It’s not easy dealing with a chronic disease in which nobody has answers for. The day-to-day reality of it is hard on my mom, her husband, and on me and my sister. People ask me all the time, “How is your mom doing?” This is a really tough question to answer. My mom is sick and as far as we know, she will remain sick for the rest of her life. This is not easy for anyone to deal with – however, many people are sick, and many people are more sick than my mom. And all of us, in all likelihood, will be sick someday. It’s just a crappy part of life that hardly anyone can escape.

There are some diseases, however, that just seem unfair. LAM strikes women in the prime of their lives – usually in the childbearing years. Many women are diagnosed during pregnancy because the fluctuation in hormone levels accelerate the disease. As in LTA founder Amy Farber’s case, many women are diagnosed just about when arguably the most exciting things in your lives are occurring. Amy Farber had just gotten married and graduated with her PhD from Harvard. She was about to enter her chosen field (social anthropology) and was thinking about beginning a family when she was told she very well may have less than 10 years to live. Her academic track record proves that she is a go-getter and probably wasn’t willing to let a disease like LAM stop her from her plans, so she established the LAM Treatment Alliance with the goal of accelerating research. She’s beautiful, stylish (love that outfit!), smart, and apparently worthy of receiving Glamour’s “Hero of the Month” (the highest of honors) last May:

In any case, while I am not really excited about traveling to England by myself to talk about LAM for 3 days straight, I do really hope that the conference unveils some new options, and inspires me - and others - to continue fighting this disease that takes too many young women’s lives.

Read more about LAM and the LAM Treatment Alliance right here. There's also a really great article about Amy and her work in fighting LAM in the Wall Street Journal.