Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The site is essential for a source for the general public, whenever one encounters the diagnosis of Kennedy's Disease and has no idea what that might be. There is simply no other source as easily available to the public."

Archives - 2015 and Older Transcripts

Topic:  Open Forum

Host:  Terry Waite

Gary_KC
Good morning. This is Gary joining in from Kansas City. It is overcast with 73 degrees this morning.
Hugo Rodriguez God   |0
Hugo Rodriguez Good morning Connie and Gary, how do you doping?
Hugo Rodriguez I am sorry I want to say "doing"
Gary_KC
Hi Hugo, I am fine thank you.
Hugo Rodriguez How long have you been diagnosed with KC?
connie
Good Morning... just having a little difficulty maneurvering the website.
Hugo Rodriguez Hi, Connie, it happen the same with me last two sessions
Gary_KC
Hugo, I was diagnosed about 15 years ago.
Hugo Rodriguez No, actually during June session I was going to Bethesda to try to participate in the exercise trial of the NIH. Gary that's a long time
Hugo Rodriguez I believe you know better the disease than me, I was diagnosed two years ago
Gary_KC
Hugo, you are still the early stage.
Hugo Rodriguez I forgot to say that I am living in Queretaro Mexico, temperature here is about 68 °F
Hugo Rodriguez Yesw, I was rejected to participate in the trial, but was very valuable to me. Before I had not a reference
Hugo Rodriguez In Mexico, the disease is not well known
elvspretzl
[b]hello
Hugo Rodriguez Hi elvspretzl, how do you doing?
elvspretzl
[b] How is everyone today?  Seems liike a small crowd, but I haven't been here in awhile.
Gary_KC
Hugo, It is a cool weather where you live in.
Gary_KC
Hi elvspretz.
Hugo Rodriguez Not really I used the temperature conversion in the internet to get the equivalence to 20 °C. Let me try again
Stewart
Hi Good morning from SOCAL
Gary_KC
Hi Ron and Steardt.
elvspretzl
[b]Hi Gary.
Ron M
Good morning Gary
Ron M
Good morning all
elvspretzl
[b]Rhode Island
Gary_KC
Hi Stewart. My fingers are not working well today.
Stewart
no problem
elvspretzl
[b]Is there a topic here this morning?
Hugo Rodriguez Google says that we are now at 15 °C (59 °F), it´s alright for this moment, at the afternoon is very sure that we are going to be above 80 °F
Ron M
Very nice Hugo. Supposed to be nice in Illinois here too
Hugo Rodriguez NOt at this moment, just saying hi to everyop
Hugo Rodriguez to everyone
elvspretzl
[b]Okay .. I see.
Gary_KC
elvspretzl, we have an open forum this morning.
elvspretzl
[b]Okay.
Ron M
Haven't been on the site for a while. Had trouble finding the Chat link. Did the KD website change recently or is it me?
elvspretzl
[b]I had to go to the site map.  It was harder to find for me too.  Then I had to download Java 7
Hugo Rodriguez I had the same trouble, what it worked was the link given in the KD page. I will copy it
Ron M
I went to the site map also. Before it used to be at the bottom of the home page. Maybe they redesigned it then
Gary_KC
Ron, all menu under the web-site has been removed. It must be a mistake,
elvspretzl
[b]There was a warning that if I downloaded Java7, Java6 would no longer function on Google Chrome on my MAC.  So, I'm using someone else's PC
Ron M
Gary, I hope so. The site is not user friendly at the moment.
Stewart
Who is going to San Diego? I have my hotel room booked
elvspretzl
[b]When is San Diego?
Hugo Rodriguez next november
elvspretzl
Sorry I was in [b]Bold.  [/b]I hope that didn't show up on everyone's screen!
Gary_KC
I don't have good health to make travel.
Ron M
Stewart, for financial reasons I am going to take a pass but I hope to join you guys one year if it moves closer to Chicago
elvspretzl
Early November?
Hugo Rodriguez What I used today to come to the chat was:
Hugo Rodriguez If you are already registered, click on this link: http://client11.addonchat.com/sc.php?id=307376 to log-in directly to the KDA chat room.
Hugo Rodriguez But at thas moment I have signed in with addonchat
Ron M
Sorry to hear that Gary, is it KD related or are you battling something additional?
Hugo Rodriguez I copied this about the meeting of next november:
Hugo Rodriguez The 2013 conference and symposium will be here before you know it.  This year's theme is "It's a Jungle out There: Together, the KDA Family is Strong".  The conference will officially begin on Wednesday morning, November 6 and run through Friday, November 8 at the Holiday Inn - Bayside, San Diego, CA.
Stewart
I missed last year, so im looking forward to the conference fortunately for me it’s only 100 or so miles away
Gary_KC
Ron, I can't walk at all. I am always using wheelchair.
Hugo Rodriguez How old are you Gary?
elvspretzl
Hmmm. Maybe I should consider going to San Diego.  Is there a location selected to 2014 yet?
Gary_KC
I am 56 year old.
Ron M
That makes it hard to travel Gary. How old were you when you transferred to using a wheel chair all the time
Gary_KC
Ron, I was 46 years old.
Hugo Rodriguez You're too young Gary. It is pit that the disease it presented too early
Hugo Rodriguez I'm sorry. I wan to say "it's a pity"
Hugo Rodriguez I'm 61
Gary_KC
Hugo, I was diagnosed with KD when I was 37 years old.
ed noack
Good morning everyone....this is Ed Noack from Texas. How are you today?
Ron M
Gary, that is a young age. KD can be hard.
Gary_KC
Hi ed.
ed noack
Hello...this is my first time in the room..
Hugo Rodriguez Not any nice Gary
Hugo Rodriguez Welcome Ed, I hope you get a lot of answers here
elvspretzl
My symptoms were becoming very apparent at 37, but I wasn't diagnosed until I was 46 or 47.
elvspretzl
Welcome Ed!
ed noack
Have any of you heard about the KD golf scramble do in Houston and donate 100% of the proceeds to KD research?
Hugo Rodriguez Not me
elvspretzl
Ed, As pointed out to me earlier, this morning is an open forum. If you have any questions, feel free to ask.
Stewart
Hi Ed, welcome. What area for the country do you call home. I’m in southern California
ed noack
I am a memeber of the committee that host a golf scramble as a fund raiser for KD research. I do not have KD but my brothers do. This is our 3rd year to do the golf scramble. In year one we donated $15,000 to KD, and year two we donated $20,000. We have a way this year all people who support KD can help...so I wanted to shre that...
Hugo Rodriguez I would like to know if everyone with KD suffer pain. I believe that not all.
ed noack
I am in Texas.....would you all like to know how you can help raise funds so we can fight this disease?
Hugo Rodriguez Congratulations Ed, that sound very helpful to find a cure
ed noack
We are hoping to do $30,000 this year, and I belive we can!
elvspretzl
I experience no significant pain presently. The slight pain that I'm starting to notice is in my lower back. I think this is because as I'm still able to walk, the pressure of my upper body on my waist is not supported by much muscle.  Make sense?
Ron M
Hugo, I have pain. Comes and goes. The muscles just start hurting.
connie
Ed where do we go to suppot the scramble?
Hugo Rodriguez Thanks a lot elvspretzl and Ron
Ron M
That is great to hear ED
elvspretzl
Good news, Ed.  It's great to see this proactive support.  $30k is a lot
ed noack
You can go to kdgolfscramble.com to support it. There are several ways to do that. One way is a hole sponsorship which gives you signage on a hole, (which you can do "in support of" or "in memory of"). Another way is we have a raffle which you can sign up for on our website. Top prize in raffle is trip to las vegas (if you don't want trip you can get $1000 cash), Tickets to sporting events (which you can sell on e bay if you can't use), $300 gift card to Home Deport, and much more.....you can send link of website to all your friends/family...and they can join the raffle
Hugo Rodriguez Ed, thanks for your enthusiasm
connie
when does it take place?
ed noack
The actual golf tourney this year is September 28th....the raffle drawing will be that day as well..
connie
Good to know.  Thank you for what you are doing to raise money.
Hugo Rodriguez I am very sorry of not knowing anything about golf
Ron M
Ed, I would be a canidate for the Raffle. I will check out the website later. Thanks
elvspretzl
I'm on the website now.  I'll bookmark and maybe send to some of my friends and supporters. Thanks
ed noack
You are welcome...it is my pleasure. I am hoping that each person who is on chat today...would consider supporting the raffle themself, but more importantly send our website to your key contacts....and ask them to support the raffle. 100% of what we collect goes to KDA.....any member of the KDA BOD can confirm that for you.
elvspretzl
Raffle for me too .... no golf.
ed noack
It would be great to see all of you sign up for the raffle....or for a hole sponsorship.
ed noack
This year we have secured a "title sponsor" that paid $3000 for the right for the tourney to be lableled "brought to you by"....we are getting bigger and bigger...I believe we will continue to exapand our fundraising. This is the first year for a raffle...so we are optimistic about what that can raise...
elvspretzl
How much of a percentage (roughly) of $$ donated to KDA go to research?
ed noack
That is a better question for somone from the board of directors....I can tell you that 100% of our golf proceeds is given to KDA...
connie
This is great publicity for Kennedy's
Ron M
Ed, I think Raffles are a great way of raisinng money. Good luck with it.
elvspretzl
That's great.
connie
Can you get any famous golfers to support the scramble?
elvspretzl
Good idea, Connie!
ed noack
Research is the key to a cure, money is the key to research...what we need is HELP. We are an enthusiastic group, but our friend and family networks are only so large...we need everyone who is a friend to KDA to ask their friends and family for support....Please, please consider sending our website to your networks (both individuals and companies) and ask for their help.
connie
will do. Good idea
Hugo Rodriguez I will do
Gary_KC
I will do too.
elvspretzl
Just found the answer to my question: Over the last five years, 91¢ of every dollar spent by the Kennedy’s Disease Association went to funding Kennedy’s Disease (KDA) Research Grants (79¢) and Education (12¢). Only 9¢ of every dollar spent went to paying operating costs(*).
ed noack
Once the tourney grows, I do believe we can get a famous golfer..but as of today...we do not. I will say we have a 3 time Olympic medal winner who plays in the tournament (a friend of the family). We have not asked him to allow us to use his name...but maybe we should.
elvspretzl
That's an encouraging breakdown!!
Ron M
That is one of the best break downs for not for profits I have read
Gary_KC
elv, thank you for the breakdown. It's a great.
connie
Best of luck Ed and thank you for your work. I will pass along the info to friends and family. Best of luck to all of you. I am signing off now. Buy
Ron M
Wishing everyone a good weekend. Need to make a move. Be well.
ed noack
Well...thank all of you for your time and interest this morning. I am grateful for whatever you can do. Please check back with us in October to see how much we raised...with your help we can achieve our goal. Have a great weekend. Ed
elvspretzl
Thanks Ed.
Gary_KC
Enjoy summer season. Let' chat next month. Bye
Hugo Rodriguez Thanks to everyone to there. I will spread the information about the founding in my family. Have a good day and listen us soon.
Stewart
Thanks,  Have a great week
elvspretzl
Guess everyone's leaving.  Oh well, until next time!