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Registered: 08-09-2017
Posts: 9
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Tell me about this conference in November. What goes on?
Registered: 08-09-2017
Posts: 9
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More info: I'm still wrapping my head around this and want to know what the KDA conference in November is and will it be helpful, is this organization helpful, etc. Thanks
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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At the last conference I'd guess there were roughly 100 attendees, perhaps 45% men with the disease, 35% supporting family members & female carriers and 20% researchers. There were discussions among those with the disease and family members. There were many presentations about what is known about the disease, reviews/updates on trials of potential treatments in people and on the research to better understand the mechanisms of the disease and potential new approaches at intervention.

I found it very valuable and will go again this year. Some aspects I think are useful for everyone. Kennedy's disease has quite a range of expression and progression and I think it is very enlightening to meet many people with the disease at the same time and learn their stories. There are men losing their ability to walk at relatively young ages, a few much older still jogging or otherwise relatively athletic and everything in between.

I went to a conference roughly 15 years ago and I was probably close to being the fittest man with the disease in attendance, though I was also one of the youngest. But I deteriorated quite rapidly and if I had gone two years ago I'd have been one of the least fit, dependent on my mobility scooter unable to walk more than a few feet without falling.

A little over a year ago I began to see Kennedy's disease differently, that Kennedy's by itself is not so much a disease but merely a factor that aggravates and accelerates damages to muscles, nerves and other tissues that occur and acccumulate with aging due to multiple factors. I began learning about other contributing factors and have pursued with much dedication trying anything and everything I can to mitigate them. I'm surprised to still be at it with more intensity than ever. Fortunately I've had sufficient success to stay motivated. In part I was lucky in that having sunk fast and low, gains were relatively easy to make and more dramatic in impact. Going forward it will likely become tougher to sustain improvement but I'm more optimistic now than at any time since the 1st conference I attended.

These conferences are motivational for me. I've set myself an informal challenge to be the fittest/strongest man with Kennedy's disease at this coming and future conferences. I'll be surprised if I'm successful this year, but I expect to be close. And I look forward to the opportunity to share my experiences and hopefully motivate others to rise to the challenge of either staying or becoming fitter and stronger than myself.

As for the structured part of the conference, the presentations, question & answer and other discussion, some of it is very basic and some is quite advanced and technical. Your background and experience will impact which parts you find boring, useful or incomprehensible.
Registered: 08-09-2017
Posts: 9
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Thank you. It's still hard for me to talk about.
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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As for your question regarding the KDA organization being helpful, it does the best it can though it is a small volunteer run non-profit and resources are limited. It was founded by two men with Kennedy's, Terry Waite and Patrick Griffin, and Terry's wife Susanne. Other men with Kennedy's and family members joined in to support their efforts and helped grow the organization and have kept it going despite the deaths of both Patrick and Terry.

I'm a junior member of the board of directors. I avoided direct involvement for many years and now regret not getting more involved sooner. I see the KDA as providing a framework for us all to help each other.
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Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614
Tel: 1-855-532-7762
Email: info@kennedysdisease.org