Around The World – Huntington Study Group 2015, Tampa Florida
As I was wrapping up my visit with my father, I saw Katie Jackson’s Facebook post about HSG 2015, the Huntington Study Group’s 2015 annual meeting. It was being held just across the state in Tampa so I jumped on a Greyhound and made my way over. A room in the Grand Hyatt at $270/night is Not Even Close to my budget so I booked into what I discovered was an upscale crack hotel on the other side of the airport and I managed to stay alive. I did my first Uber rides back and forth to the conference, which turned out to be excellent.
For those of you who don’t know, my wife Allie had Huntington’s Disease and passed away 3 years ago. My son Jordan tested positive for the dodgy gene so we’re hoping for effective treatments or eventually a cure. HD is a fatal and currently-incurable genetically-inherited disease. Here’s a link to the description of HD from the HSG web site: http://huntingtonstudygroup.org/living-with-hd/hd-basics/
“The Huntington Study Group (HSG), which was formed in 1993, is the worldâs first HD cooperative therapeutic research organization. Today, HSG is a world leader in facilitating high quality clinical research trials and studies that bring us closer to finding more effective treatments for HD and reducing the burden of HD for families affected by the disease.
HSG is an organization of compassionate professionals dedicated to finding treatments that make a difference, and improving the quality of life and outcomes for HD families. How? By bringing together families, medical professionals, clinical researchers, HD advocacy groups, and sponsors to raise awareness of HD, share knowledge and best practices, and develop innovative treatments.”
This was different from the family-oriented HD conferences I’ve been to, this was all about the research teams working to find treatments and cures. It was an excellent peek-behind-the-curtain to see what happens long before a pill appears at the pharmacy. A 3-day blur of FDA trials process (you literally have no idea how long and difficult it can be to get a new drug to market), HD patient standardized symptom assessment, outreach to the HD community, worldwide MRI machine differences, demands on the time of the researchers, a trial of deuterium-enhanced tetrabenazine, a trial of dopamine regulators for improvement in motor control, a trial of an immunomodulatory compound for reduction in loss of brain matter volume, experiments on gene silencing targeting the mutant htt protein, experiments on small-molecule drug binding to prevent expression of mhtt via duplex RNA and autosense oligonucleotides, experiments on adreno-associated parvoviral vectors delivered via gadolinium-tracer-guided intercranial injection, experiments on delivery of treatment agents via lumbar puncture and bolus or infusion, it just goes on and on. We’re sciencing the shit out of this!
I’ve been in the world of HD for about 20 years and have absorbed a lot of the underlying science but it’s very humbling to sit in a hotel ballroom with about 200 MDs and PhDs (or some with both), realizing that one of these teams will halt the progression of symptoms or outright cure this disease. I have my fingers crossed for my son and all other HD families. When it happens, I’ll be nominating them for a Nobel Prize. Overall I was very impressed with the excellent sharing of information and experiences among the teams, and bringing new people into the teams, grooming the next generation of researchers. As humbling as it was to have these people dedicating their careers to our little orphan disease, they all went to great lengths to thank the HD community for inspiration and support and participation in their trials.
One highlight of the week was being in the men’s room, doing my thing, while a discussion about the mobilization of cerebral spinal fluid in non-human primates is going on around me. That doesn’t happen every day…
It wasn’t all white-lab-coat time though, there was a constant stream of food and drinks although Floridians apparently can’t make a soft taco with cheese or sour cream… To my dismay, Pepsi seemed to have the hotel locked up, but when I asked nicely they would bring me out one can of Diet Coke from a secret vault in the basement. There was a great reception one evening, then the next night Katie and @[100007024299737:2048:Katrina Hamel] gathered a group of HD people from the local area at Whisky Joe’s. Our first order of food for about 10 people came on a huge tray which went upside down in the air and came crashing down, spraying food everywhere. We weren’t in a rush so we told the staff not to worry about it. After dinner we went down to the beach area where the live band was playing.
In the late afternoon of the last day after the sessions were all wrapped up, I heard the siren song of the Tampa Tesla showroom calling. I grabbed an Uber and found it in an office / light industrial building complex. I met Agnes who was originally from Scotland so we talked about my trip.
Next up is an overnight stop with Elan Bush and Kate Flagg Bush in Sanibel, then 4 days soaking up the sun with the beautiful people in Miami Beach before I fly out to cold and rainy Glasgow.