Saturday, July 30, 2011

The Final Week! Italy and Istanbul


I wanted to travel to Italy because Italy is the home of an interesting problem: former professional soccer players are being diagnosed with Amyotrophic Lateral Sclerosis (ALS) at over six times the normal population. It’s a problem that we are seeing in America with former professional football players being diagnosed at a similar rate. If you’ve been following our research you know that our Dr. Ann McKee connected brain trauma to ALS in football players and boxers. I suspect the same in soccer players, but we’ll need evidence to get there.

Dr. Colombo
My first stop this morning was with Dr. Massimo Colombo of the University of Milan. He is a former team doctor for one of the big Milan football clubs. The hospital was about 100 degrees, windows open – not a place for me at 270 pounds. Very Italy. Dr. Colombo didn’t know why I came – he was meeting with me on the recommendation of Dr. Nicoteri in Germany. He believe the concussion problem is underappreciated, and that doctors have to fight with team management to rest players with concussions. He shared with me the story of doctors from a different local pro football team, to remain nameless, who have systematically bought time for concussed players by naming a ‘scientific institute’ for injuries that purports to have precise objective ways to determine when an athlete can return to play. Somehow the club management has bought in to the idea that there is a perfect science to coming back from injuries, and the doctors are not hassled. It’s interesting.

Mario Negri

From there I caught a cab across town to meet Prof. Massimo Masserini of Universita‘degli studi di Milano-Bicocca and Dr. Mario Salmona, Instituto di Ricerche Farmacologiche „Mario Negri“ Milano, and the head of the Department of Molecular Biochemistry and Pharmacology. Mario Negri has nearly 700 scientists and staff working in one building on various projects, which Dr. Salmona said helps facilitate learning and collaborations. Dr. Masserini and Salmona are working both together and separately on multiple projects on neurodegenerative diseases, including nanotechnology.

When I shared my work and my concerns about headers in soccer, one of the doctors, who I won’t identify, said, “So you want to change soccer?” I said, “We changed football in America, it can be done.” He said, “Yes, but in Italy, they might shoot you.” I’m not sure if he was joking. We discussed opportunities to collaborate, and then they introduced me to Dr. Elisabetta Pupillo, who is doing a lot of epidemiological work on Amyotrophic Lateral Sclerosis. She shared with me some preliminary data on history of concussions and risk of ALS, but I’m sworn to secrecy!


This morning Nicole and I grabbed a train to Torino, Italy, home of the 2006 winter Olympics. The trip was to meet with Dr. Adriano Chio, a neurologist who has done some of the research in Italy finding that soccer players have a higher risk of ALS. I knew of Dr. Chio because he was interviewed for the HBO Real Sports with Bryant Gumbel piece from August 2010 that broke Dr. McKee’s discovery. We discussed his thoughts on the theory and work that is being done in Italy. He even told me they had a case a while back of a female soccer player who developed ALS and fronto-temporal dementia at the same time – I am suspicious, and wish Dr. McKee could have looked at that case. I enjoyed the discussion, learned a lot, and I look forward to finding ways to work together in the future. Nicole and I headed back to the train station and caught a high speed train to Rome.


I’d never been to Rome before, so it was difficult for me to appreciate just how old and amazing some structures are. So I was sure to get in some tourism and pictures before heading over to the Italian Olympic Committee (CONI), aka Scuola dello Sport. Prof. Carlo Tranquilli, Direttore Sanitario and Head of the Traumatology and Rehabilitation Department at the Institute of Medicine and Sport Science of the CONI put together a meeting with the top sports medicine researcher s in Italy. I was blown away – there were over 20 doctors and medical staff in the room to hear me speak, and then a few Italian researchers presented their work. It was very cool, as I was familiar with some of the studies they presented, so it was exciting to put faces with the names I’d been reading for years. I must thank former Eisenhower Fellow Pia Marconi for making it happen. Our work was incredibly well received and the audience were real policy makers – one asked, “What’s your thoughts on BMX bikes? We have a meeting tomorrow to discuss regulation.” I was influencing policy in real time. I told him about the multiple former “Extreme Sports” stars whose families have been calling, worried about CTE symptoms in their 40’s. I am worried about the lack of regulation over that activity.

That evening five former Eisenhower Fellows took Nicole and I to dinner in Rome at a fabulous place with the most famous Sicilian chef in the country. Great food, small portions. It’s keeping me from gaining weight, but it’s also making me perpetually hungry. Where are my American portions?! Antonio Colombo organized the dinner, and we were joined by Pia Marconi and others, most of whom were involved with civil service. The Fellows there believe that Eisenhower Fellowships can help them build a stronger government, and therefore recruit in that direction. After reading an article about Prime Minister Berlusconi’s Bunga Bunga parties and other issues they have had, I can see why.


The next morning Nicole and I flew to Istanbul, Turkey, with the main goal of meeting Dr. McKee for a conference on Motor Neuron Disease sponsored by the Kirac Foundation and organized by Dr. Bob Brown, an ALS researcher extraordinaire and a brilliant doctor that we, through Dr. McKee, have begun collaborating with. The first night, however, I met with the Eisenhower Fellows. The Istanbul EF crew have a great reputation for having one of the strongest alumni associations on record. They are led by 82 year-old Nezir Kirdar, an entrepreneur who was forced to leave Iraq just prior to Desert Storm and resettled in Istanbul. He was the younger member of the Iraqi parliament at one time, and actually met Eisenhower at the White House when he was a Fellow! He assembled a team of VIP fellows, many of whom were involved in the medical field, and we had a wonderful dinner at a club on the Asian bank of the Bosphorus. I was told Attaturk, the father of modern Turkey, founded the club and was a member, with the intention of it enable and train Turkish men to conduct more Western-style business. He also gave me a terrific speech on how I need to both take advantage of and give back to the Fellowship.


The next morning I headed over to the conference and heard some terrific presentations – the one that stood out the most, other than Dr. McKee’s, focused on why, in ALS, only some motor neuron cells die, and others, perhaps right next to them, survive unharmed. One of the experts began the discuss talking about the fact that while we focus on a small number of types of neurons, the reality is there are probably more than 10,000 unique types, and each one is vulnerable to different problems. Dr. Chris Henderson went through some studies they’d conducted that found that found a specific genetic marker that predicted which cells would die in a rat with ALS and which would survive. It was really exciting, and of course we talked about collaboration…


FINALLY, the next day we picked up Dr. McKee and did some tourism. We were very lucky to be escorted by a Turkish couple. When I was in Brussels for the EUVP, I met Gokce Uysal, a prominent Turkish economist, who was also participating in the program. She and her husband took us to the Blue Mosque, the Hagia Sofia, and the Grand Bazaar. What a way to wind down the trip!

I could not be more thankful for the opportunity, and I thank Eisenhower Fellowships for the experience and for helping advance the cause to Europe. This is only the beginning!

Wednesday, July 20, 2011

Days 24 to 27 - Rejunvenation

Thursday 24

As you may suspect, I’m back in the states now, but have been too busy to finish posting my trip! I will jam in the end to a few posts so we can all move on with our lives…

Germany Ice Hockey Federation

This morning I met with the Michael Pfuhl, Technical Director of the German Ice Hockey Federation (Deutscher Eishockey Bund, DEB). Kevin McLaughlin of USA Hockey recommended I sit down with him. Kevin has really sunk his teeth into the concussion issue, and last week USA Hockey voted to raise the checking age in boys hockey from 11 to 13 and have more training programs involving learning how to control one’s body with contact so they can avoid concussions. Needless to say, concussions weren’t yet on the radar screen in German youth hockey, although they don’t hit as much in Europe and hits to the head are heavily penalized.

Meeting with the IOC

I then caught a train from Munich to Lausanne to meet with Patrick Schamasch, head of sports medicine for the International Olympic Committee (IOC). I have to thank women’s ice hockey legend Angela Ruggiero for setting up the meeting. Angela and I were at Harvard at the same time, and she’s medaled in every Olympics since the late 90’s. She was recently voted onto the International Olympic Committee’s athlete’s commission, and she’s always been very supportive of the concussion cause.

It was an adventure getting there – while Swiss trains run like clockwork, German trains do not. And apparently they don’t tell you when they do track construction in the middle of the day, so I nearly missed the meeting because we had to change trains in the middle of nowhere, travel for 20 minutes on the new train, then take a bus for 20 minutes, and then catch a different train. I called Sabine and had a car waiting for me at Avis at the next stop so I would still have a chance to make the meeting, but luckily a friendly conductor informed me that a different connection through Zurich would still get me there with 5 minutes to spare. I am pretty helpless without the internet on my phone here. 7 hour trip total.

Dr. Schamasch picked me up at the hotel and offered to take me anywhere to eat. He said, “Do you like exotic food?” I said, “Absolutely. Anything but schnitzel. I’ve had too much!” We went to his favorite Chinese food place – it’s better in the states. I learned that Dr. Schamasch was a former goalie for the French national team and then went to medical school to be an orthopedic surgeon. He ran a clinic near Albertville, France, and got involved with the IOC for the winter games there in the 80’s. He was asked to become the first medical director for the IOC and has now held this position for over twenty years, and has guided them through the doping era well. The IOC was also one of the organizations that has supported and signed onto the concussion consensus statements, including the 2008 Zurich guidelines, along with FIFA and the International Ice Hockey Federation. I shared with him our work and we discussed where the next steps are in the process. We also discussed his leadership style and management responsibilities with an organization that presides over every country in the world. Needless to say, it’s complex. Dr. Schamasch said it might be a good idea to attend the meeting for the next consensus statement, which will take place in Zurich next March. I’m there.

Friday 25

Hockey Doc Geneva

This morning I caught a train to Genevea, on the western edge of the country and minutes from France, to meet with the neuropsychologist of the Geneva pro hockey team. Dr. Catia Beni invited me into her office and we talked shop. I can’t go into too much detail on her relationship with the team, but she is not able to do much. Only two players have reported concussions in five years, and they asked to go right back for fear of losing their jobs. Not a good situation.

Spa Treatment

I got right back on the train and connected back through Zurich to go to Bad Ragaz, a resort town. When I contacted the IIHF, they first recommended I see the head of their concussion work, but he’s in Canada, so they recommended Dr. Beat Villiger. I had no real idea what I was getting into. Dr. Villiger is the director of a medical center at the Grand Resort, which I was informed, was voted the number one spa/resort in Switzerland. Over email he recommended I stay as his guest – I didn’t have to be asked twice. When I arrived I was walked to my suite overlooking the mountain by my butler. Enough said. Dr. Villiger recommended I enjoy that afternoon and we could meet for breakfast, so I grabbed a mountain bike and rode down the Rhein river for a few hours. I followed that up by hitting a bucket of balls at the driving range. I was a little tired from all that exercise so I took a dip in the thermal spring pool. Could be worse.

Saturday 26

My breakfast meeting with Dr. Villiger got pushed back to lunch because he had to do a press conference. The Grand Resort just made a deal that if the Swiss Alpine Team performs well at an upcoming competition, they will get to recuperate at the resort for free. When we finally met, I felt like I found a kindred spirit. Along with advising the IIHF, Dr. Villiger is the top Swiss Olympic doctor and on the boards or medical committees of it seemed 50 organizations. He didn’t need any convincing that the issue was serious. He pulled out a folder from his, “Respect the Head” campaign. He had developed a program similar to CDC’s Heads Up program, and had gotten it distributed to all ice hockey players, coaches, and parents in Switzerland! He’d been working on the idea since the mid 90’s, and they finally broke through last winter. His program was even better than CDC in some ways – instead of parents getting a one-pager on concussion, they got a eight page packet. He pulled no punches. Dr. Villiger said a few of his athletes retired from concussion in the mid 90’s and he’s always felt some guilt. He also told me that while some organizations only pay lip service to this issue, the IIHF is working hard to get this information out there. He said I shouldn’t let my German experience taint my trip – they are late adopters. As I reflected on the meeting from the hot tub later in the day, it seemed the stop in Bad Ragaz was rejuvenating in multiple ways.

Sunday 27

Traveled to Milan and was joined by my girlfriend Nicole!

Tuesday, July 5, 2011

Days 22 & 23 - Building Strong Collaborations

Day 22

More EU Coordinated Research

This morning I met with Petra Pütz of the International Office of the BMBF, which coordinates major research projects among the EU. Even though they have put out a call for proposals on neurodegenerative diseases, they were unaware of CTE. However they did have many great recommendations for how I can get more people working on this and individuals to reach out to while I am here.

German Olympics

In the afternoon I took a train to Frankfurt to meet with Dr. Michael Vesper, Director General of the Germany Olympic Sports Confederation (DOSB), along with Olav Spahl, who is in charge of sports medicine. This was another meeting set up by former fellow Miriam Merckel – she really has pull in this country. The German Olympic Sports Confederation is a real leader in sports medicine, and Olav told me they provide annual training to over one thousand physios and take the lead with doctors in sports medicine as well. Olav said DOSB has yet to make an effort with concussions – their latest educational campaign was focused on sudden cardiac death, and they had dramatic improvements in athletes using free annual screenings. He was very enthusiastic that he could pull off a similar campaign on sports concussion, and was knowledgeable on this issue, and even asked „What would you do?“

He made an interesting point that is worth noting – he said the International Olympic Committee was one of the sponsors and co-signers of the Zurich Consensus Statement of 2008 that upgraded concussion guidelines and recommendations. That statement included the approval and promotion of the SCAT II, a Sideline Concussion Assessment Test, as a free and standard resource for assessment of concussion.

While it is widely used in the US, Olav told me it isn't used much in Germany... primarily because it hasn’t been translated into German!!! I guess the devil is always in the details.

Olav was kind enough to drive me to the train station, and his girlfriend is working at MIT, so I look forward to taking him to Dr. McKee’s VA CSTE Brain Bank in September during his next visit. Making the train with minutes to spare, I headed to Munich, home of Oktoberfest.

Day 23

Collaboration with the University of Munich

This is a big day. Before I left for the Fellowship, I was summoned to a meeting with Dr. Marty Shenton of Harvard Medical School. Dr. Shenton is our collaborator and a world renowned neuroimaging expert, and we conducted a pilot study with her to work toward developing diagnostic criteria for CTE. Her lab is like the Epcot Center, with post-doctorate imaging experts from around the world taking two year fellowships there to learn the latest techniques and bring them back to their home countries. One of those fellows is Dr. Inga Koerte of the University of Munich. Dr. Koerte and her team have taken an interest in TBI and CTE, and have started imaging soccer players. The meeting was held to inform me of this new collaboration, and to invite me to the University of Munich on my fellowship.

Fast forwarding to real time, this afternoon I was set up to meet with Dr. Koerte and the Dean of the medical school Prof. Dr. Reiser to discuss the collaboration. It turns out that the University of Munich also has one of the top neuropathologists and top brain bankers in the world, Prof. Dr. Hans Kretzschmar. At the last minute I was able to secure a meeting with Dr. Kretzschmar prior to meeting with Dr. Koerte, and traveled to the Munich suburbs to his lab. Dr. Kretzschmar has an impressive publication list, including many on TDP-43, one of our areas of interest, and also serves as coordinator of all German Brain Banks and BRAINNET II, a collaboration of brain banks across Europe, so he’s kind of a big deal.

One of my goals of this trip is to get other top researchers from around the world working on CTE. Dr. Kretzschmar seemed like the right person for the job, so when he welcomed me in I gave him my pitch. He asked challenging questions, but luckily my work with our team had me well prepared, and after he reviewed Dr. McKee’s images of CTE brains (her images are the best in the world), I think he was hooked. I feel strongly that we’ll be able to launch something there.

I then headed across campus to meet with the dean, Dr. Koerte, and her boss Professor Dr. Birgit Ertl-Wagner. This was a bit of a make it or break it moment. Dr. Koerte said the dean was interested in the subject by not necessarily sold that it was the right direction for his top imaging team. And the dean is a radiologist as well, so this is his area of expertise. Long story short, we nailed it and the dean said he’d like to join us for dinner, which I was told rarely happens.

Next I met with the full imaging team, including grad students, who were the German doppelgangers for our grad students at BU. I had to do a double take. Many of them were doing their dissertations on various aspects of intracranial pressure, including trauma. They showed me some of their pilot studies which included pictures and videos of blood flow and pressure around the brain, and even cerebrospinal fluid. I was blown away. They are conducting studies operating on the theory that with various diseases or traumas, blood flow may change. One theory was that the tissue of a concussed person actually permanently hardens with scar tissue, changing blood flow patterns. I’m excited for them to do more work in this area.

To end the evening we met up at the Augustine Beer Garden, which is simply the greatest invention in the world. It’s a giant park with dozens of tables covered by trees where you drink beer from giant mugs and eat various meats. As a joke I told them I wanted them all to dress in traditional Bavarian garb so I could have the authentic experience. When I arrived, half of them did it! Men in Leiderhosen, the women in the frilly dresses. Apparently people keep the outfits in the trunk of their car just in case a party breaks out. As I looked around, about ten percent of the place was just hanging out in their Bavarian uniforms. It was great.

The dean and the entire team came, including 3 of Dr. Ertly-Wagner's little girls. The oldest, in first grade, enjoyed practicing her English with me, but she had only gotten as far as, “… ees…Sophie.” Too cute. The younger ones knew the international language of high fives and fist pounds, so we were good. I taught them pinkie swears and thumb wars.

The whole group was amazing hosts and I look forward to collaborating with them in the future.