This October I was honored to be invited for the second time to be a Visiting Scientist to the Portland Veterans Affairs Medical Center and Oregon Health Sciences University (OHSU). This typically involves giving a couple of talks to the group at the Parkinson’s Disease and Movement Disorders Center and interested researchers, and I decided to take the opportunity to extend my stay by a couple of days so that I could meet with some other friends and colleagues.
At the Homburg neuroacanthocytosis symposium last year, the Pero-Edwards family, who have been deeply affected by XK disease (McLeod syndrome) had invited me to visit them in Portland, OR, so this was the perfect occasion for us to get together. Karen (wife of the late Jerry Pero), Linda (mother of Geno and Tony, who very sadly died 5 years ago), Geno and his wife Joni, Richard (Linda's husband), and I had a really beautiful lunch at Q restaurant in downtown Portland (rated #1 on Tripadvisor!). We had a very productive discussion about many aspects of XK disease including a number of clinical issues and what is needed to move the research forward.
Linda had called ahead of time to request a table where we would have some privacy and time to talk for a few hours; when she went to pay the bill she spoke to the manager, Mazen Hariri, and explained to him about the family members affected by this ultra-rare disorder, including the sudden death of her son Tony from XK disease. He was very moved by this then told her that he had lost his daughter, also to a very rare disease, and they shared a hug. And then, most generously he picked up the tab for our meal! (group photo)
The next day I met Dr. Miranda Lim (photo at bottom right), indefatigable sleep neurologist who took the lead on our recent paper on sleep disorders in XK disease. She performed sleep studies on the local family members affected by XK disease, and continues to be Geno's sleep specialist. We talked about many aspects of our work in XK disease, and came up with some interesting questions to be answered. 
On Thursday October 17th I gave 2 talks at the Portland VA/OHSU - the first on "The approach to the patient with chorea" (which of course mentioned VPS13A and XK disease) and the second on "Recent advances in neuroacanthocytosis syndromes". The audience included a number of university neurologists, researchers, and fellows, including some (such as Dr. Amie Hiller) who have already been involved in our work in this area. The talks seemed to be well-received, and there were some excellent questions.
My visit was capped the next day by lunch at a local winery - certainly a wonderful way to mix business and pleasure!
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