Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

Archives - 2015 and Older Transcripts

Topic: Open Forum  
GFurman   Good morning David how are things with you
david   Good Morning GFurman it is very warm and sunny in southwest Ohio today.  I am well, how about you?
GFurman   doing well its cloudy and rainy here in colorado and thats good we need the moisture 
david   From what I've read the rain is welcome sight, however our daugther Anita is in the Denver area this weekend with a number of college friends and they had hoped to go a long hike somewhere today.
GFurman   I think she will be ok. the rain is only suposed to last a short time then be sunny and warm the rest of the weekend
Ron M   Good Morning
GFurman   Mornin Ron
Ron M   Morning GFurman. How are you.
GFurman   doin well 
Ron M   GFurman, not sure if I know you. Where are you from?
david   Well we look forward to hearing about her adventure when she returns to her home.  We love traveling in Colorado, last year we spent time in the southwestern part of the state.  I was very sorry to read about the Aninmis River problems, what a beautiful area, I hope it recovers soon.
GFurman   eastern Colorado...out in the desert
david   Hey Ron M how are things in chicago?  What's the latest news on the conference?
Ron M   Very nice, I imagine thats beautiful country
GFurman   It is pretty country i think it ok now
Ron M   Hey David. The conference is going well. When are you planning to be coming into town?  
GFurman   My Niece is up in the mountains hiking somewhere and the pics on facebook are great
Ron M   GFurman, whats the weather like in Colorodo ? How cold does it get in the winter months ? 
david   I think I booked us to check in on Tuesday and will check out on Saturday, but then that's trusting my memory and that is not always wise.
Ron M   David, I know what you mean by memory. I am currently planning the Tuesday night dinner.
david   So far the only post from Denver by our daughter was a "selfie" of four young ladies all bright and smilely.
GFurman   it generally runs in the low teens with about a week below zero and in the summer it is in the high nintys and sometimes hits one hundred but the humidity is very low so its tollerable
david   Well the one thing I do know for sure is we will be participating in the Tuesday night dining gathering.
GFurman   i was born and raised in eastern Ks. where the humidity runs 98 percent so this isnt bad
Ron M   GFurman. Sounds nice. I am near Chicago. The winters are just brutal. I keep thinking about places to relocate to. I am looking out west. Maybe Northere Arizonia. Not sure
Ron M   Good Morning Jerry F
jerryf   Good Mornimg
GFurman   Arizona is nice in the winter but the summers can be brutal
GFurman   Mornin Jerry 
Ron M   Where you from Jerry ?
jerryf   Kansas... The Flint Hills.
Ron M   GFurman - thats what I have heard. I know if few people that have moved there. I was thinking Norhtern Arizonia might not be as bad. I am not sure though.
GFurman   I dont mind the heat so i was ok there but some people stay inside all summer
Ron M   Jerry - I am not that familiar with the area. I live about an hour or so outside Chicago 
david   We drove from Cincinnati to Denver in 2005 and we enjoyed the drive through Kansas.
Ron M   GFurman - I don't ming the heat either. It helps with the KD. Are you still working ?
jerryf   I'm south west of Topeka about an hour.
Ron M   OK, I know where Topeka is. Been through there
jerryf   I am in Council Grove Ks
GFurman   kinda i used to be a truck and heavy equipment mechanic and i cant do that anymore. now i am the administrator/Principal at Riverview 
GFurman   c
GFurman   Christian School
GFurman   oops
GFurman   Jerry F is my brother we both have Kennedy's
Ron M   David, you have been to a few conferences. Do you remember what people have paid for dinner the night before the conference ?
david   Ron M most of northern Arizona is mountain desert, we enjoyed a driving vacation through the area one summer and very hot but almost zero humidity.  If you found shade having lunch outside was nice.  I have not been there is winter but have heard that snow and cold is not unusual.
Ron M   GFurman - Sounds like a good transition. Thanks for pointing out you and Jerry are brothers.  
jerryf   have they published an agenda for speakers at the convention
Ron M   David, thats what I am learning. I know people keep telling me to go down to Florida. I don't like Humidty and I am not an Ocean person so I started looking at places out West.    
Ron M   Jerry - not yet. Still lining them up. Almost done. Are you going to the conference this year ?
jerryf   i am seriously thinking about it
jerryf   i figured this would be as close as the convention would get to kansas
Ron M   Jerry - this is my first conference. A lot of guys tell me that its a great experience. I know David has been to a few.
Ron M   Jerry, that would probably be correct
david   Ron M yes I have been to everyone since 2010 and most of them had choices starting at say $12 for a entre salad.  If I am remembering correcly Harry Carey's would be toward the upper end of the price range but doable.  Is there one of the "famous" chicago deep dish pizza places in the area?  That could be fun too.
jerryf   are there day trips for the wives away from the convention, or do they attend sessions
Ron M   Hey David. I love Harry Careys. I am currently working with them to see if we can set something up. It is very expensive though. I am just not sure what people are comfotable with. Chicago is just expensive. The other Board members are telling me that they want the dinner within scooter distance of the Hotel if possible. This limits things. There are some great pizza places around but they are 10-15 minutes away by car. 
david   jerryf, I would say most of the spouses attend the conference.  However my wife Margy will be there but other than the Tuesday and Thursday dinners, she is not attending the conference sessions.  She attended the full Baltimore conference and just mentioned that it is a very good learning experience and would encourage any first timer to attend so that they hear the information first hand.  This year she just as soon let me tell her about what's new.  Besides with our daughter living in Chicago, she plans to spend at least a couple of lunchtimes with her.
Ron M   Hi Jerry. I don't believe we have any formal day trips planned for wives. In the past, I think there are some sessions maybe geared towards wives. David can probably speak to what has occured in the past.
david   There has always been at least one session where the KD'ers (the men) meet separately from the ladies.  At the early conferences I attended these separate sessions gave both the men and woman a chance to voice fears and perhaps frustrations without their "other-half" being in the room.  At the last three conferences a psychologist conducted one joint session and then separate men-only and woman only sessions.  As far as I could tell that format with a professional has been very well received and I for one hope it will be repeated this year.
GFurman   Jerry are you guys still thinking on driving there
jerryf   yes we will drive
Ron M   David - has Andrew reached out to you about speaking at the conference and sharing your home remodeling experience?
Ron M   GFurman - where did you guys grow up ?
david   Ron M as for price versus distance i think higher food costs wins for our group.  I just think the savings on food costs might just get spent on trying to buy accessible transportation.
Ron M   Good Morning Jack
GFurman   we grew up in Council Grove Ks. Jerry and our sis still live there
jackj   Good Morning.  problems with my browser this morning
david   Ron M no I have not heard from Andrew about the conference, other than needing his help again to complete the registration process.  for some reason my computer settings seem in conflict with the payment process.
Ron M   David - Good point. thank you 
jackj   Does anyone know how I can get a copy of the schedule for the annual meeting?
david   Hey jackj glad you could join us.  What's on your mind this morning?
Ron M   David - thats odd. What happened with the registration?  
GFurman   will any of the sessions be brodcast over the internet this year?
jackj   Our son ,38, recently disgnosed. My wife and I are thinking of attending 
Ron M   Jack, we are still workning on the schedule so it isn't out yet.
david   I think the registration info was collected but I was not directed to the pay now page.  I had this problem last year and for both of them Andrew and I work it out so that he got my info and processed the whole thing.  
Ron M   GFurman - nice place to grow up. So what brought you to Colorodo ?
GFurman   My wife was a manager for a five and dime store and they transfered her so i followed
jackj   OK.  If we attend will we be able to meet some of the key people and get an update on research activities?
Ron M   GFurman - we are going to try and broadcast some sessions but it depends on the set up and equipment. Not sure how successful we will be.
david   jackj if you have never been I strongly encourage all of you to attend.  It is always a learning experience and that first conference for me helped me take control of this aspect of my life and make the best of it!
GFurman   will there be a way to find out during the confrence 
david   Ron M as I did for the last couple of conferences I am willing to help with it.  
jackj   Thanks David.  Our son won't be coming but we are hoping it will be productive for my wife and I.
Ron M   Jack - not sure what you mean by key people but most of the Board members attend and the Doctors and Researchers familiar with KD also are invited and share 
jackj   That sounds good.  We are interested in finding out how we can be of help in moving a cure forward
Ron M   David - thank you. Let me talk to Andrew and find out whats going on. I know your experience in making your house handicapped accessible is a topic that can benefit alot of people.
Ron M   David - I have heard of that problem. I am glad they got you registered.
jackj   is there any new information on the clinical trial of BVS XXX
david   jackj, even before I attended that first conference I was introduced to Dr Fishebeck by email (a research director at the National Institutes for Health) and we traded messages on some of my questions.  He has attended every conference I have been to since 2010 and there are researchers from around the world who attend and they share with us the latest info on research.  Most of it goes over my head at times but then Ed a fellow KD'er brings some of the terms down to laymen level and I can gain some insights
jackj   Sounds terrific, David, Thankyou.
jerryf   well i better go have a good labor day weekend
Ron M   Jack - not that I know of. I am the first to admit though that I don't follow the trails like I should. I usually learn of the information when I post it on the website which is at times late. Not sure if anyone else has heard anything
david   jackj, have you spent any time on the KDA website, some the prior year conference session transcripts can be found there to give you some idea of what to expect.
Ron M   Jerry - have a nice weekend. Hope to c u at the conference
jackj   Good Idea.  I'll look at them.
jackj   Thanks for your patience with my interruptions guys.  Have a great holiday
Ron M   All - its that time for me. Going to get something to eat and take my dog out. Hopefully I will see everyone at the conference. 
jackj   Goodbye
GFurman   Have a good weekend guys
david   Well gents it has been another quick chat hour, I hope you all have a great weekend and I also hope to see you next month at the conference.
frabayrui   hola desde España
frabayrui   I can to participate in the clinical trials in Washington? I have not problem to travel from SPAIN. 
frabayrui   It is possible?