I am pleased to report on the 4th Annual Misophonia Convention, held last week end in Las Vegas at Circus Circus, Please note that we need help to create a better website for the Misophonia Association and we are looking for volunteers to put that together. The plan is pretty clear and it would take some hours but could be of such aid to the world!
160 people came this year for Friday eve-Sunday afternoon at 5 pm
29 youth attended including Jr Hi to College age
The set up was fantastic, very quiet, beautiful rooms that could divided into four spaces for workshops and sessions
We had two big screens and projectors and a middle large screen which made seeing the slides and presenters very easy
62 people attended the Friday night Meet n Greet, enjoyed delicious meal and a free drink, it was very well attended and enjoyed, in a perfect divided restaurant-bar location, the youth were given the back space for the week end to use as a hang out zone.
Cindy did a masterful job again with the food and snacks, the choices were perfect and softer items but with good variety and compliments were bountiful.
The new Misophonia Association rubber rainbow bracelets were handed out and everyone loved them, many purchased more to hand out at home, a great idea for this year’s goodie
A silent auction was created and a HS student donated a gorgeous stained glass window image of misophonina, Jeff Gould donated his movie and items, other things were given and a two night stay at Circus Circus was donated by the hotel
The speakers were amazing, we had international visits with Mercede Erfanian on her work in Amsterdam, with Dr. Ali Danesh with a throught review of the literature and his current research, and wonderful presentations by Michael Mannino, myself, and Dr. Jaelline Jaffe on various topics.
We all watched the movie Quet Please and were able to speak to the director Jeffrey Gould afterwards via Skype. At that moment, hearing of his need for funds to translate the film into Spanish and French, we instantly raised the $3000 needed to do so. That was exciting.
We announced the new Research Grant project to award small grants to individuals in graduate school or in research, for misophonia, and the committee of Dr. Jaffe, Dr. Danesh, and a new PhD neuro scientist will vet the grants to be awarded in June 2017. Over $5000 was donated on that spot to increase the $1000 initial fund. Other small grants were given over the week end and the fund is growing.
A young boy, Jaxon, did a surprise fund raiser for the Association, to allow more people at attend on scholarship, and presented us with a check for $2000 that he raised! We quickly created the Jaxon Award, to be given in recognition for significant contribution to the Misophonia Association or the field of misophonia, and handed him a t shirt on Sunday with the news right on the front! HIs parents decided to continue to gofundme account for a while to raise more funds.
The event was filmed and we can expect the new video to be ready in a few weeks for purchase. The filming of these conventions is expensive but important so we can continue to share and expand over time, out memories and information as we proceed.
Paul Tbachneck attended, well known musician and figure in the world of misophonia, sang us songs and fixed technology and spoke, it was very nice to have him attend and he agreed to try out the board of directors.
Others held a research and development meeting, about ten people, and they quickly formed a cohort to investigate and pursue this idea. Some were interested in joining the BOD on a trial period to see how funds could be raised to devote to research and find a cure for this problem,
It was a very busy and productive week end. Dr. Jaffe, Dr. Simon, Allison King and myself were very pleased with the outcome. We have a great fellow, Dave, who is going to help plan the meeting for October 2018. This will be a relief to the current volunteers who found that planning the site and its issues, an obstacle at times!
The convention mostly paid for itself in terms of finances, and we will use a bit of our savings to pay the balance. This is important to know as some people wonder about the costs, and it is very expensive to hold these events at hotels and centers. The entire cost for the 160 people will be close to $22,000 this year and we received $21,000 in registration fees. Not bad.
The best thing was meeting and sharing. We listened to your evalutions last year and put in four break-out or sessions. Led by various professionals and volunteers, these sharing circles were deemed very useful and meaningful. Personally we felt it was a good mix of scientific research and interactive sharing.
The best news for the convention was the publishing of Dr. Kumar’s long awaited research showing, once again, the fundamental issue is in the central nervous system, in the physical structures of the brain rather than something purely in the thought processes or ideas or psychological function. This research is affirming for those with misophonia in helping us really see that it is indeed a physical condition and not emotional or mental. This was very gratifying for many of us who believed this to be true. We hope more significant research will emerge on how to address this issue and how to cure the condition.
Marsha Johnson, AuD