Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am glad to finally see information being made available about this disease.. THANKS for the website"

2016 Chat Room Transcripts

Topic: Open Forum      
         
TomK   Good Morning    
GregF   Good morning    
carofer   Hi tomk    
TomK   Sunny Bright Day & the Reds have actually won 3 games in a Row!    
GregF   51 and raining in north east Colorado    
carofer   Rainy, gray and chilly here in central california    
Johnson   Hoping for rain in Southern California this morning    
TomK   What is a Chilly day in California?    
carofer   about 50 degrees    
Johnson   we don't dare go outside    
TomK   Its been the Low 40's here in Ohio except for today    
carofer   and we keep the gas fire logs warm    
GregF   its been in the 80s here all week. now the weekend its storming again  
carofer   Terry's passing was a shock to me. Wonderful person way too soon  
TomK   Greg not to change the Subject BUT does everybody use POT in Colorado?  
ronmoffett   Good morning all    
Guest2.56   Good Morning    
Johnson   We are hear today because of his efforts to put this site together    
GregF   NO not even, a big percent of us wish it wasn't available     
marcorabellini Good morning    
TomK   Does it have any Tax advantage to YOU?    
GregF   no they told us it would help the schools but so far none has been distributed 
carofer   without cell phones,  social media and pot, california teens would have nothing to do
Johnson   My wife and I were thrilled to see the MSU announcement on the Living with Kennedys blog
ronmoffett   GM Marco    
marcorabellini We are excited about that MSU news too.    
marcorabellini Hoping it gets some footing and trials sometime soon.    
GregF   I have a friend that has a medical pot prescription and he says that it really doesn't do him that much good 
Johnson   not sure if I understand correctly; it sounds like the defect may be in the muscles and that affects the motor neurons instead of the other way around
TomK   I thought all Problems were associated with the Motor Neurons!    
carofer   I wonder if there is some way we could get one of the MSU researchers to give a presentation at the kda conference
Johnson   or even do a webinar    
ronmoffett   That would be a good idea.    
Johnson   much sooner    
marcorabellini Sounds like she was researching the signal between the neuron and the muscle. And found that the signal reception in the muscle might be the problem
Johnson   it looks like a paradyme shift from where research has been focused  
marcorabellini It sounds promising. But it's only been done in mice up to this point. I've been associated with a lot of pharma startups long enough to know not to get too excited too soon. It's very difficult to judge the final outcome of a treatment at the mouse trial stage. 
DavidOhio   Good Morning all    
marcorabellini But the fact that there may be another approach that can actually be treated is exciting. And that no one else has done research on this until now.
GregF   Good morning David    
Gary_KC   Good morning, David.    
Johnson   yes it seems the first step is understanding what is really going on, and that looks like where we are now
ronmoffett   I agree. It seems to take a long time to go from a mice model to clinical trails.
ronmoffett   Good Morning David    
marcorabellini GM David    
TomK   Hi David    
DavidOhio   Sorry I am late to the chat, but I think the discussion is on the new focus on impacting muscle cells directly and I agree that is encouraging news, it was discussed as a an exciting new avenue at last year's conference and I hope we hear more this year
marcorabellini When and where is this year's conference?    
Gary_KC   David, it is a great news, isn't it?    
carofer   Are there general medical treatments for synaptic neuron communication improvement?  I think some vitamins are supposed to help
DavidOhio   The conference is in San Diego this year in November, there is some info already on the KDA website
Johnson   do we have dates for November?    
ronmoffett   I know its early but is anyone planning on going to the conference ?  
marcorabellini Great. I'm looking around and can only find 2014 and 2015 info.    
Johnson   my wife, Jenny and I are planning to go    
DavidOhio   I just got a monthly message from KDA and this is the note on the conference. We are back in San Diego for 2016! Save the dates, November 9-11, 2016.
carofer   I am going to try to drive down to SD. Love to see Wild Animal Park nearby any chance I get.
carofer   I went to a couple of  conferences and always came away enlightened and hopeful
marcorabellini Great. Marking my calendar. We'd like to go too.    
Johnson   Hello Stewart, good to have you on the call    
DavidOhio   Ron -- sounds like some of our chat friends this morning are not getting the monthly emails what do they need to do to receive them? 
marcorabellini Any way we could get Youfen Xu to present at the conference?    
Johnson   great idea!    
ronmoffett   San Diego is beautiful and the KDA conferences are very informative. Unfortunately I am not going to make it this year but I am glad to learn that many of you might take advantage of the opportunity.
Johnson   I'm a little confused by the new chat format.  it says private chat by my name.  are you guys seeing my comments?
marcorabellini yes    
TomK   Yes    
Johnson   Thanks Marco    
ronmoffett   They need to be registered on with the KDA. If they are, might want to check your spam folder. If you want me to check to see if you are registered. Please send me an e mail at This email address is being protected from spambots. You need JavaScript enabled to view it. and I will check the system and confirm that you are registered.
marcorabellini What's the email address that the newsletter would be sent from?  
DavidOhio   Like Ron I will not be able to attend the conference this year.  I have attended every conference since 2010 and learn something new each year.  I encourage all of you if you can handle the travel to make plans to attend.
ronmoffett   Johnson - the private chat is the default chat. There is a KDA chat room but it appears that we just start our chats in the private chat and that's where we stay. Its just easier. 
carofer   Was cause of  Terry's death related to KD?    
Johnson   got it    
DavidOhio   This is the address I see on my message    
DavidOhio   Kennedy's Disease Association (KDA) ; on behalf of; Kennedy's Disease Association (KDA)
ronmoffett   Marco - its from This email address is being protected from spambots. You need JavaScript enabled to view it.    
TomK   Ron. Will the conference be Broadcast over the Web?     
marcorabellini thanks    
ronmoffett   Carofer - Terry had a stroke. He was very young. Not sure if we are at a higher risk for stroke.
DavidOhio   sorry it did not copy well will try again This email address is being protected from spambots. You need JavaScript enabled to view it.   
carofer   thanks ronmoffett    
Johnson   how old was Terry    
ronmoffett   Tom - I am not sure. My guess is that they will try but the person that has handled that aspect in the past wont be at the conference. Just not sure.
ronmoffett   Terry was 55 when he died. Too young    
Johnson   Thanks Ron,  he sure made a big difference for all of us!    
Gary_KC   Yes, he was too young. We miss him.    
carofer   Will suzanne continue her great work with kda?    
ronmoffett   Johnson - he did. He will be missed. If u haven.t read his memorial page. He was a very interesting man. The page is Terry Waite    
DavidOhio   I agree both Terry and Suzanne helped all of us by starting the KDA it is now up to all of us to continue what they created.
Johnson   when we first learned our son had KD it was very scary.  it was very comforting to go to the site and see all that was going on.  I haven't seen  the site but I will now
ronmoffett   carofer - I am not sure. Suzanne hasn't been on the board for awhile now. Maybe in time she will start to become more active. 
carofer   Oksy. I had the impression that suzanne maintained the web site, so I was worried that it might go away
Johnson   Does anyone know how Bruce is doing, we love his blog    
marcorabellini Anyone have info or experience with a cane or walking stick and air travel? And rules about what can and cannot be taken on a plane?
ronmoffett   carofer - no. she hasn't been involved with the site for awhile.       
carofer   I have carried a cane on the plane without any problems. I put it in the luggage rack
ronmoffett   Johnson - I talked to Bruce yesterday for awhile. He is in good spirits and he says he is doing great. I think its that warm Georgia air.
carofer   I checked my rollie through the baggage claim    
carofer   Pick up the rollie where the golf clubs are claimed    
marcorabellini Thanks. I've started using a walking/hiking stick lately but it has a pointy metal end so I was thinking I'd probably need a regular looking cane for a plane.
ronmoffett    Marco - when I traveled. I always had a cane. No problems.      
ronmoffett   Marco - yes a regular probably collapsing cane would be best. That's what I had. 
carofer   BTW, I always request a wheelchair at the airport -- it's free but sometimes you need to reserve it a week ahead of the flight
DavidOhio   Marco I use a cane from Leki and they have rubber tips available for their walking sticks.  I have never had trouble taking it on the plane.  At the security check in they trade me a wooden cane for the metal one and send mine through the scanner
marcorabellini Do you need a handicap card or something? My ego is making me resist as much as possible but it's getting a bit more difficult to walk, so I've started with the stick.
Johnson   are they going to publish anything on the Novartis clinical trial    
marcorabellini Hmm. The walking stick I have is also a Leki. I'll look into it. THanks.  
DavidOhio   I have one for use with a rental car but have never been asked to show it to travel on the plane.
carofer   Handicap placard needed for easier parking, but nothing for airport  
TomK   What about TAKING a Wheel Chair on the Plane?    
carofer   I have never done it but I have seen it done. I think there may be size and weight restrictions on what various airlines will allow
DavidOhio   TomK I have seen them use chairs to help people on and off but usually they are airline items.  I know Mike Goynes was able to check his scooter and I suspect they could handle your motorized chair as luggage
ronmoffett   Tom - u should be able to take one with advance notice. U need to call the airlines and let them know when u buy ur ticket. When my friend came in to visit me. She brought her wheelchair. 
TomK   I have a battery Operated Chair 300Lbs without me on it?    
Johnson    anyone know what green dots mean by our names on screen?    
ronmoffett   Tom - my friends chair wasn't motorized. They just put it on the plane. A lot of KD guys travel with that travel scoot
carofer   The size and weight of the chair that they allow is dependent on the  particular airline.  I would suggest getting good measurements and checking ahead of time with the airline.
DavidOhio   TomK if you are a AAA member I would ask them for advice.  If you are not a member I can call and ask if they have info that they could send me
Gary_KC   Tom, airline allows us electric wheelchair with dry batteries.    
TomK   Good Idea but Airline customer service does not relate to my situation  
carofer   The airline web sites I have used have a special number for handicap service  
TomK   Gary it does have dry batteries but Transfer in  and out of the chair is one of main concerns!
TomK   David whatever you find Out from AAA I would appreciate the info!  
GregF   Got to go, have a great month guys    
TomK   Me too got to go Great Chat!    
marcorabellini Thanks everyone. See you next time.    
Gary_KC   It was a nice chat. Have a nice weekend.    
carofer   have a great month -- thanks for the info!    
Johnson   Thanks for your patience in helping me navigate the new chat format.  Goodbye all
DavidOhio   Until next time be safe and stay vertical!