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."

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Kennedy's Disease Chat Transcript  05-16-2009

Topic: Open Forum

Host: Bruce Gaughran


Bruce: Good Morning
Dart!: Good morning Bruce!
Bruce: Only you and me on this morning. How are things in Minnesota today?
Bruce: Morning, Poohsdaddy
poohsdaddy: Good Morning
Bruce: Poohsdaddy, I need to ask. Where did you get the name Poohsdaddy?
Bruce: Morning Ute
UTE: Morning All
Bruce: Morning Billeric
billeric: Good Morning guys
Dart!: Oh, they are probably as good as yesterday, but I am in British Columbia, and Greetings to All!
Bruce: Billeric. Is it Bill?
billeric: Yup
Bruce: Sorry Dart, for some reason I had you in MN. I sure like Vancouver and the island.
gary_kc: Good morning all. This is Gary joining from KC. It is a nice day and about 55 degree.
Bruce: Morning Mike
Bruce: Morning Gary
billeric: Anybody for Az. today? 105 today.
MikeG: morning everyone - nice day in FLA today
gary_kc: Morning Bruce.
Dart!: No problem Bruce. It is food to be with y'all
Bruce: I have plenty of family in AZ and they are already complaining
poohsdaddy: It used to be Pooh -- a nickname from my college roommate cuz he thought I looked like a Pooh bear with my full beard back then, and the daddy part came about after getting married 28 years ago today.
Stan: Good morning all.
Bruce: Morning Stan
UTE: I'm foR Az...which I could be there for my grANdsons Bday
Bruce: Mike, do you want to tell everyone about J9
Dart!: The best to you on 'your day', Pooh
loshimo11: Good morning everyone. This is Luis Shimomura joining in from a sunny and warm San Francisco.
billeric: Haven't seen you out this way for awhile EWric.
Bruce: One of my favorite cities
MikeG: well, it's finally going to be a reality it looks like - J9, that it!
UTE: Bill...I finally replace my ten yeAR old computer so i could get thru
loshimo11: Bruce... We kinda like it too!!!
poohsdaddy: Dart, Thanks -- it's another day for us to do whatever........................
billeric: Good to hear from you.
MikeG: we're beginning to get the first stages of a trial together even tough it may be 3 or 4 years untill it comes to fruition
Bruce: J9 was the results of a research project by Dr. Change at the Univerisity of Rochester. We provided a grant for his work in 2006 I believe.
Bruce: AndroScience has applied to the NIH for a grant to move towards a clinical trial.
Bruce: Dr. Fischbeck will run tests on mice to determine if the results found earlier continue to hold up in their mice models.
MikeG: it was going to be way to expensive for us so we were hoping for a foundation grant when all of a sudden the stimulus package happened...
gary_kc: MikeG and Bruce, that is a great news, isn't it?
Bruce: Yup!!
Bruce: Morning RH
RH2706: Morning All
Bruce: Things take time in the research field, but this is a positive step forward towards another trial
loshimo11: Oh. I wasn't aware that this was a result of the stimulus package.
MikeG: NIH was given $2B - although with the bad news this week about the Russian trial, they may loose some of that... :(
poohsdaddy: Does the stimulus package contain $$ for KD and other research?
Bruce: The Stimulus package just provides additional funds for research.
MikeG: it really is GREAT news!
Bruce: Any type of research
billeric: Is the J9 specific to Kennedys or does it apply to other diseases also?
Bruce: Good question
Terryw: Hello
Bruce: The focus of this specific research is for KD
Bruce: But, it is also has applications for other types of health issues.
Bruce: Morning Terry
loshimo11: MikeG...Hate to sound ignorant, but what russian trial are we talking about?
loshimo11: Hey Terryw.
poohsdaddy: Are there any other clinical trials in the nearer future?
Dart!: Good morning Terry!!
Bruce: I haven't heard of any. We are waiting for the final results of the NIH trial (should be any day now).
Terryw: Good morning
Bruce: J-9 showed a lot of promise in the original mice models. The concern at that time was the quantity that a human would have to take to be effective. This has been worked on recently by AndoScience.
billeric: Mike, I haven't heard about the Russian trial. Can you fill us in?
MikeG: it appears that the first year milestone will be for NIH labs to test J9 against KD mice to prove that it is viable. And even before that AndroScience will have to come up with a ingestable drug because as I understand it, the test AndroScience did was with injectable J9 - and we sure don't want to have to stick ourselves everyday - even though we probably would if that was the only treatment they can come up with...
RH2706: Does anyone know if there is a Senator or Representative pushing for KD research fundospecific
MikeG: loshimo11 - the acholic trial
Bruce: None that I am aware of
MikeG: it was on the news Wed or Thurs this week
poohsdaddy: I rememberr hearing about J9, but not what it is supposed to do?? I would be willing to take a shot a day if they thought it could be helpful.
Bruce: However, the Rare Disease community is pushing for more funding for rare diseases, such as KD.
loshimo11: MikeG...For a second, I thought you had said alcohol trial. We've all had one of those before!!!
MikeG: :)
billeric: Fun, but didn't work!
Bruce: :)
Bruce: We are also supporting several congressional respresentatives to remove the waiting period for Social Security-Disagbility and Medicare.
Bruce: This looks positive right now.
UTE: I skipped the beer trial at the Eagles Concert this last weekend
poohsdaddy: Although the alcohol may be tempting -- I'd be afraid of the inter-action with any/all of the other medications
Bruce: Welcome to the Hotel California
Bruce: Morning
dsproul: Good Morning! Sat. the day to sleep in.:}
Bruce: If we can get this bill passed, there will be no six month waiting period for SS-D and Medicare will also be effective immediately.
loshimo11: poohsdaddy...Many years ago when I was first diagnosed with ALS, I went through a trial drug (can't remember the name) where I would inject myself every other day. Not a lot of fun...
RH2706: It may be a good time for us to send messages to the Senators and Representatives who sit on the NIH oversite committee to ask for addditional funding for KD research
UTE: It was aMAZING...AT THE CONCERT...NEW parking lot with no Eagle spectators grabbed the four corners of my chair and carried me up four flights of steps
Bruce: Good Idea RH
Bruce: WOW Ute, that must have been something to see. Very nice ... very nice indeed
poohsdaddy: Bruce, is there any set procedure to encourage our representatives to eliminate the two-year waiting period for Medicare. Could we develop a form letter to send to them??
billeric: You have a lot of gumption, Eric. I just plain don't go.
Bruce: It is currently in sub-committee meetings. We have a couple of representatives that are trying to move the bill forward. Once it moves towards a full vote, we will probably have something sent out that can be useful in influencing our representatives.
dsproul: Thanks for the info Bruce!
Bruce: The KDA along with many other RARE disease members are supporting the bill. More to come, but we are closer than we have ever been.
Bruce: This is where the 945 KDA associates have a little weight. Numbers count when you are trying to influence congress.
poohsdaddy: It sounds like most of us are willing to try almost any treatment or medication -- for the sake of our children and grandchildren. Thanks Bruce!! That sounds encouraging.
Bruce: I know some of you get tired of us asking that you have family and friends with KD to sign up, but as I mentioned, SIZE DOES MATTER!
poohsdaddy: Bruce, does KDA have a list? of members or possibly a map to show the numbers and where we are?
dsproul: There was a letter on the KD site that we could send out.
Bruce: Because our database is confidential, we do not share information that can identify individuals. We do occasionally put out information on numbers in each state or country.
Bruce: I will look at updating the state/country list and publish it on our site.
dsproul: An appeal letter.
MikeG: Ok, I was wrong, it was China - not Russia... here's the article:
Bruce: I have been pushing people recently to sign up, because I want to hit a 1,000 active associates by the end of the year.
billeric: Thanks Mike.
poohsdaddy: I continue to e-mail my friends to try the amily chat; and join the fight we are taking with KD.
Dart!: I have only one brother left, and he is 'in denial' - figures that he is jiggered due to falling off his roof. I figure that he fell because of KD. But he is German, so I can't tell him anything!
MikeG: it has nothing to do with KD - just some bad news for NIH... misappropriation of funds...
RH2706: According to Google, Congress gave $10 B of Stimulus Money to NIH. If we get to the Senators/Representatives now, we may be able to get additional dollars for KD research
poohsdaddy: RH -- that sounds like another good idea!
RH2706: I am attempting to figure out who they are so that we could direct messages
Bruce: A single letter or phone call to your specific senator or representative is powerful. Several letters or calls really carries the message that his/her constituents care about something.
Bruce: I am certain that it has the same effect in Canada
UTE: Utah's Governor was just appointed ambassador to China...I should talk to him about sending some of their money to Chinese with KD
MikeG: is anyone juicing vegetables here? I've started and it sure has increased my energy level! Not any more strength but I sure feel better - lost about 10#s too!!! :)
Terryw: I feel like a vegetable
Terryw: :(
RH2706: I lved in Washington 30 years and so how the funding game works. We are in a time window where we could get significant dollars focused on KD
MikeG: :0
poohsdaddy: Bruce, You're right abbout that. My congressman helped to expedite my filing for Social Security Disability. He's due to make the rounda again for own hall meetings soon. I'll have to go and try to talk to him.
Terryw: I should eat better
Bruce: Perhaps RH, you could share some of that knowledge.
Dart!: A bad day, huh Terry! Sorry about that, but tomorrow will possibly be better. Hope so!
MikeG: I never knew how important nutrition was!!!
Bruce: NORD (National Organization for Rare Diseases) is who I was talking about earlier when I wrote RARE. Too many acronims!
Terryw: Yep, Ifell on my head yesterday. very sore today
RH2706: The first step is to figure who has oversite on the dollars. Then we send messages and phone calls asking what they are asking NIH to do for KD reseach
Terryw: landed on my face/forehead
poohsdaddy: Terry -- OUCH... hope that you feel better soon
Terryw: in dirt though
Terryw: not cement
Bruce: RH, you sound very knowledgeable in this area. Is there any way we could tap your expertise so we are more effective as an organization? Write us an email with your thoughts please.
billeric: I had a head fall this week too Terry. Feel backwards and hit my head on the sidewalk. Makes you wonder how many more of these a guy can take.
Terryw: exactly Bill
RH2706: Will do. Where do I send it?
MikeG: sorry to hear that Terry - I've done just that... trying to get up and my arm buckled... :(
Terryw: Bill no concusion?
UTE: Terry...did you have to get stitches?
Bruce: This email address is being protected from spambots. You need JavaScript enabled to view it.
RH2706: I will get it out by Monday
billeric: Not that I know of!
Terryw: UTE, No, Just a scuff mark on my forhead, I could not get my arms out in front of me ontime, I don't even think that they could have stopped my fave from hitting
Bruce: Thanks RH. If there is any area of expertice that the KDA is in need of is education on how to move our congressional members to act on our behalf.
UTE: must have gotten quite a goose egg
MikeG: if you start feeling any weaker you should go get a CT scan. John Mengel fell and hit his head like that and immediately lost all of the srength he had left... he passed away about 2 or 3 weeks later.
MikeG: very true Bruce
poohsdaddy: Several years ago -- one of my doctors told me to just let go rather than try to brace myself. I had broken bones in both hands and was laid up for a long time. And, that was before knowing anything about KD>
loshimo11: Had a fall in the garage a couple of years ago. Tripped on a piece of rug and although the room was fairly empty and safe, my head went straight for some metal computer stuff about 15 feet away. It sounds funny now.
Terryw: A big horse pie saved my face
Bruce: I always figured that if there was anything in the entire room that I could trip on, my foot would find it.
Terryw: I was putting the horses out
billeric: I think falls are just part of Kennedys. We try to minimize them but they still happen.
poohsdaddy: Has anyone said yes to the cruise idea?
Bruce: Terry, I was going to make a copy lol, but decided it wasn't too funny at the time
Bruce: make a comment
MikeG: we have had 17 yes responses so far
UTE: My big problem lately is getting up after the fall... wish there was a car jack for getting KDers off the floor
billeric: Me too Eric.
Terryw: I had the rope and I walk them out slowly, He spooked and jerked the rope and I went face first to the ground, kinda funny
MikeG: I was hoping for 30 but some may have not seen the message so we'll give it a bit more
Terryw: I was more worried about him then stepping on me
Terryw: he missed me again
Bruce: Ute, getting up is very difficult if there isn't anything near by to crawl up on.
Bruce: Terry, how many more lives do you have with those horses (cat's lives)?
poohsdaddy: UTE -- that has been a problem for me too. Mike, are family members also welcome to join us on the cruise?
Terryw: I crawled to the pipe fence and I was able to get back up
dsproul: My cane has saved me from falling many times
MikeG: absolutely
gary_kc: Are you still interesting in lupron research report? My friend who has SBMA in Japan sent me the information. A research report, Neuropathology and Therapeutic Intervention in Spinal and Bulbar Muscular Atrophy, was published in MOLECULAR SCIENCES of PubMed site.
loshimo11: We should get our ideas together and come up with some type of gadget to help us with Kennedy rise and fall gracefully.
gary_kc: The following is the link:
MikeG: everyone who wants to can go on the cruise - the more the merrier
UTE: I've lost the strength to use the side of the bathtub or bed to get up so now I scoot all the way to the living room elevatable lazy boy chair and even then TAKES several attempts
gary_kc: You may download the full text file.
poohsdaddy: My sister and brother-in law had asked when I told them about it. Thanks.
Terryw: I am going to go for today, good topic bruce, you guys have covered a lot of ground today
dsproul: Thanks gary.
gary_kc: It is an interesting result in page 6. A graph B shows 144 weeks lupron trial that covered phase 2 and the following open-label trial. We know the lupron improved swallowing function only so far, but we hope that the further longer trial might show the slowing down progress of the muscle weakness????
Bruce: Take care and stay upright
loshimo11: Take care Terry.
Bruce: The Internet has become such an important tool for all of us to keep up to date on research and health related issues. It is truly amazing how far we have come and still have to go...
Bruce: Every time I check, I am amazed at the number of page hits the KDA web site has each week.
billeric: Your right Bruce. Think where we would be if we couldn't communicate with this means.
Bruce: I only have to go back to my father's generation. Snail mail, nightly news, the newspaper ...
MikeG: That's right Bruce - there is NO better place for KD info than our web site! NONE
Bruce: Of course, I have still not joined the Twitter generation. I keep on reading about it, but still haven't found any application for it to take up my time.
poohsdaddy: Ditto -- our children are already far far ahead in knowing so much with the internet.
Bruce: And I don't even want to think about texting ...
billeric: Me too Bruce. Also facebook.
Bruce: Of course, my father looked at me with my Beatles haircut and Beatle boots and just shook his head
MikeG: testing is the only way I can communicate with my son during the day - he can't talk in the cube-farm he's in...
MikeG: texting
Bruce: And UTE, talk about expensive ... CONCERTS! Whn I went to the the Stones, the Who, ELP, ELO, etc. it cost $15-$25. I thought that was expensive.
MikeG: lol
poohsdaddy: Mike, are you the one who said I could call you to hear a real voice?
UTE: kids are almost like zombies when it comes to the planetaRIUM where I work...we had to shut off our comments kiosk till after the school kids leave in the afternoon...but they still spin the ball and try to type
Bruce: Today, it is $85 - several hundreds of dollars. I am just too cheap!
MikeG: sure - anytime!
dsproul: Is there a site that I should refer my doctor to?
billeric: Got to go guys. Getting hot already. Talk with you in a couple weeks.
Bruce: What are you referring to, dsproul?
Bruce: Take care Bill
loshimo11: Take care billeric
RH2706: I also got to go. Bruce I will be in touch Monday
dsproul: seems like my dr. is out of the loop
Bruce: Thank RH. Take care
UTE: My wife and I hardly ever go to a concert...but for Mother's cost me about $100 a ticket
Bruce: Do you mean other than the KDA web site?
dsproul: yes
Bruce: Send me an email with what you are looking for and I will try to respond with some good information and our FAQ pdf document.
dsproul: OK, thanks
Bruce: This email address is being protected from spambots. You need JavaScript enabled to view it.
MikeG: me too - until next time... stay vertical!!!
poohsdaddy: Thanks for the # Mike. Thanks to all for being here today. You each make a difference!!!
Bruce: Thanks for joining us today.
loshimo11: Well, I gotta go. Please stay healthy and vertical everyone...
Dart!: Have a good day, All - I wish you well!
UTE: Bruce...thanks for all you conveyed
gary_kc: I got go too. Have a nice weekend, all. Bye
Bruce: A friend just returned from Lost Wages (Las Vegas) and she said that concert tickets out there were several hundred dollars apiece. WOW
poohsdaddy: Gotta go too.. Hope to have our new grandson here befor the next chat date.
Stan: Bye all. Didn't have much to contribute, but gave me time to get motivated for the day.
Bruce: Congrats!!!
UTE: Bye Stan
dsproul: bailing
Bruce: Well, it is time for me to take my dog for a walk (he walks and I ride). Take care