NDA 3: The Research

Ah, the much-delayed Friday entry! But, I’ve been running like crazy ever since my return, as so often seems to be the case the wrapping up of the conference seems to have heralded the beginning of a new era for me. Let’s see if we can still remotely capture the essence of that Friday with any kind of accuracy, shal we?

Fri, August 14

Up early, surprisingly very little drag after sleeping like a log the night before. I read from 4 till approximately 6, then zip through shower, inhaling a blueberry muffin, and other morning tos and fros as we prepare for the day.

We get over to the hospital, first going through that cold lobby, then being relieved that the floor on which the conference is hosted isn’t similarly chilled. She and I are pretty much the only ones there when we arrive, but this suits me well. Better early than late any day.

She notes the interesting view from the large windows that look out toward an apartment building just across the way from the hospital. A woman gathers her pillow, covers, and the like from a bed she has placed on the balcony, where she apparently slept. We surmise that this may have been due to not having air conditioning inside of her apartment. Not a lot of northerners have it, or at least they hadn’t. I think that’s starting to change these days.

She also sees a man step from his place onto a balcony a floor below and make quick gestures with his hands, as if saying a quick prayer. He doesn’t stay out much longer than that, though.

Finally, others start to trickle in. As with my other times attending the conference, I am fitted with a hearing loop. Only this time, I never quite get it to work well, as it is staticky and difficult to discern what is coming through the microphone. I wear it for the first half of the day, then just give up.

And now, it’s my turn to get nervous! I sit there with my palms becoming more and more sweaty as Dr. Kathie Sims goes through the preliminaries, introducting everyone to the facilities and telling us how things will basically work. It is just after 8:30, and in a few short minutes, I will give a speech as President of the Norrie Disease Association that I haven’t even really practiced.

Dr. Sims introduces me, but first we have a surprise for her. She is about to retire from her post at the hospital, and so we give her a gift card to a local restaurant called Ester, and a plaque engraved with the words: “In appreciation of your years of research, work and dedication to the Norrie Disease community.” It is one of those rare moments where I wish I could see facial expressions, so that I could gauge how she reacts to this gift. I bungle it a bit, but ah well, I’m learning on my feet!

All things considered, the rest of the speech goes pretty well also. I give brief intros of the rest of our board: Jean, (kind of an advice-giver who has plenty of previous board experience to back it up) Cara the treasurer (Brains of the operation,) Paula and Rikki (Co-membership chairs and both fierce advocates,) Jan, (our long-serving secretary who must somehow hear through all manner of phone noises, including people washing dishes (that part made people laugh)), and of course myself. I then give a nod to our recently resigned members, Bruce the former president, and Mary, the person who largely made me feel comfortable at the conference.

I then outline our future vision of where to take the NDA, noting primarily that the conferences, while good, can be costly both to the organization and those who wish to attend. To try and remedy this, or at least add a new angle, we will look at making smaller online presentations that can be available to whomever wishes to attend them.

I wrap up with a tribute to the late Mike Kosior, whom I’m sure I’ve referred to earlier in this blog. He sadly passed just prior to the 2012 conference, and I remember him for his belief in me, willingness to help me try and locate other employment, and the nickname he gave me via Email: Chief, which I think suggests that he foresaw me taking such a position.

Our next speaker, the keynote Jonathan Mosen, gives a speech entitled The Gratest Gift (Text which is inspirational and meant to lend hope particularly to parents of those with Norrie. If you haven’t, I’d recommend reading it. In it, he spoke of growing up as a blind person in New Zealand, and having to overcome some pretty significant odds to achieve all that he has. We appreciate his willingness to contribute in this way.

Next, after a small break during which some ate fruits provided by the association, we listened to presentations on visual perception from Dr. Xin Ye and hearing loss research by Dr. Nathan Edge. Both of these were packed with information, much of it above my head unfortunately. I do know that Ye talked some about the origin of Norrie, in the NDP gene, how the retina works, which receptors facilitate connections that can lead to cell death, and a very detailed description of proteins that either enhance or inhibit gene expression. I think one of her group’s most important findings is that vascular and visual problems result largely from the disruption of a certain signal, and in some cases if that signal is restored during a small window of time, some functioning can be maintained. I do note that my interpretation of what she said could be very wrong, so if you are really interested, I’d recommend listening to her talk (Conference recordings to be posted soon, will link up).

Edge talks about much the same things, but as they are related to hearing loss. He notes that things such as antibiotics, aging, epigenetic factors, and other diseases lead to hearing loss. Along with the vascular issues caused by Norrie, the hearing cells in the cochlea can also be damaged by processes that are not yet entirely understood. He notes that possibly within four years, treatments could begin to be tested that may re-create the lost hair cells and thus restore natural hearing. Probably good reason for me to hold off on a cochlear implant if I can. How I long for natural hearing!

At this point, we are released for much-needed sustenance. I grab a boxed lunch of ham and cheese sandwich, a pear, chips, cookie, and sprite (because I want to try and wake back up), and she and I decide to hike over to the hotel room for a bit. I always need a bit of time to de-compress, so very much appreciate this. We scarf it down, and head back over for the next round.

At 12:30, we hear from Dr. Colburn on more hearing loss issues. He is the one with whom I spoke on Thursday, and so he leads off his talk by talking about the “social cocktail effect” we addressed at the party. His talk focused on how the two ears work together, especially based on how sounds travel different paths when going into either ear. Also, everyone’s ear shape is specific to the individual, which also effects how things are picked up in an environment. He continues with a detailed discussion about how neurons fire and respond to specific frequencies. He wraps back around to talk about the challenge of sorting through a conversation that is bouncing around everywhere, my number 1 social difficulty, and how it may be corrected by synchronizing the neurons again, an ability that we lose with increased hearing impairment.

The day’s final presentation was a panel consisting of myself, Rikki Chaplin, and Jonathan Mosen. The recording is such that it is difficult to make out what was said, but we mainly just answer questions from parents and other audience members regarding when we first became aware of blindness, socialization, sleep challenges, and issues involving dating and romance. If you would like me to go into further detail on any of these, let me know in comments. I think the panel was well received though, as it usually seems to be.

Then we break into our little groups, mine being men with Norrie. Along were the affore-mentioned panelists, my cousin Calvin, Jean, and a sixteen-year-old. The mother of an individual with intellectual disability, Maryann and Jamie, also chose to join us. We pretty much spend the entire time talking about living with hearing loss, not surprisingly. It is always nice to get in this real networking time.

And with that, the first full day of the conference concludes. My girlfriend and I make our way out of the building and into the pleasant warmth of Boston, stretching our muscles for the first time in eight hours. She has decided to have dinner at a small pizzeria called Felcaro, from which we will get pizzas at conference lunch the next day. The room has only about four tables for sitting, and only another couple is present as we eat. It is also sweltering inside, as is common for such establishments. We bother order cheeseburger subs, but only get a single order of fries to split. Given the size of the sandwiches, a foot long and packed with stuff, we could probably have split that as well. We enjoy consuming though as we chatter about our thoughts on the first day.

Back in the room, I stretch out on the bed and listen to sports as she makes phone calls. We stay this way until about 10 PM, at which time we finally call it a night.

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