Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"KDA is One SUPER, Non-Profit Organization."

Our Focus Remains on Research, Education and Support

The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts. We distributed information to more than 10,000 neurologists to help them recognize clinical signs and symptoms of Kennedy’s Disease.

Will my child be born with this DNA defect?

It takes an enormous amount of money to fund research…more than any of us can afford alone, but together, we are capable of great accomplishments. We are searching for available foundation grants, but the process is lengthy. We need researchers to continue their work, and it is only the KDA that makes funding this disease a priority.

Kennedy’s Disease Knows No Boundaries...

It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers. The defect is in the ‘X’ Chromosome that makes testosterone almost a poison to his body.

What is Kennedy's Disease?

Kennedy’s Disease (spinal and bulbar muscular atrophy) is an adult-onset “X” linked inherited disease with symptoms usually beginning to appear between the ages of 30 and 50. However, onset has also been reported as early as in the teens and as late as the 60s.

2002 - October 19, KDA Conference Update

Kennedy's Disease Chat Transcript10-19-02

Topics: Topic: 2002 Post Conference Update

Host: Susanne Waite

Chat Participants:

Susannew
chuck
johni
bsofree
teda
johnm
billeric
terryw
don48312
ms-ronni
murf

BEGIN CHAT

Susannew -- Hey Terry, fancy meeting you here!
terryw -- you to. LOL
johni -- {welcome johni}
terryw -- hello John
johni -- Hi from cold showery England!
Susannew -- Hello John.
teda -- {welcome teda}
Susannew -- Its a bit overcast here today... they say we're going to get
some showers this week.
Susannew -- Good morning Ted. Is Sue with you?
teda -- No
johni -- Hi Sue and Terry. How are you both?
terryw -- We are good John, recovering
terryw -- Hi Ted.
teda -- Hi Terry and Susanne
murf -- {welcome murf}
murf -- Good morning
terryw -- Hello Murf,
teda -- Hi John. Doing good after that long trip
Susannew -- Yes, a 5 hour flight back from Baltimore!!! No movies or food
on Southwest, but a good priced flight! We just have to remember to pack
our own food when flying Southwest.
Susannew -- Hello Murf... if we can ask... where are you located, are you
in the KDA database?
murf -- Yes, under Murray Williams
terryw -- I thought that was you
don48312 -- {welcome don48312}
Susannew -- Hi Don. Is Judy with you?
don48312 -- JUDY AT GYM WORKING OFF FOOD FROM BALTIMORE
Susannew -- Hello there Murray! Is Karol with you?
murf -- This is my first time chatting so please bare with me. Karol is
sleeping still
Susannew -- Yes, Karol said she's not a morning person!
murf -- Not really!
teda -- Hi Don
don48312 -- HI ALL
murf -- Hi Ya'll
don48312 -- got home at 10:30pm on tuesday
Susannew -- Don: How's Judy enjoying her new ring?
don48312 -- u mean my new ring. she loves it. wanted to bid on other
things, but couldn't figure out how to get on plane
Susannew -- It was so great to meet everyone in person and put names with
the faces. And to see those we've met before at the 2 previous
conferences. It was just like a class reunion!
Susannew -- Karol kept bidding everyone up... GOOD JOB KAROL!!!
murf -- We had our fan go out on the air conditioning unit yesterday and
still waiting a repair man
don48312 -- where u live murf?
Susannew -- I had to fight it out with her for my compact mirror!
Susannew -- Is it still hot there?
murf -- I think we all had fun! Yes It's about 80 but very muggy
chuck -- {welcome chuck}
Susannew -- Good morning Chuck and Anna Lea! Glad you can join us.
terryw -- I got my wheelchair back to LA with no problems this time. I had
the loading supervisor come up to me in the plane before they offloaded
it. Its in the shop now getting the final repairs.
murf -- I'm glad they looked after it on the turn trip
don48312 -- judy and i had a great time. when is next conference?
Susannew -- We would like to hold another conference next year if we can
afford to do so.
don48312 -- good 2 hear susanne
Susannew -- We've checked into the American Society for Human Genetics and
when and where their meeting will be held and we can do the same thing we
did this year in wrapping our Conference around theirs.
teda -- I'll second that Susanne
terryw -- It would most likely be in Los Angeles
don48312 -- i'd love to wrap around a slot machine!!!!!!!
murf -- I have committment from two more people for Hope 5, we can pay for it.
Susannew -- They show it to be in November 2003 in Los Angeles, but I do
not know exactly where they are holding it yet. They might not have a
location contracted yet... I've already written an email to their
conference coordinator, but she is currently in Baltimore at their meeting
right now! Hope to hear back from her in the next couple weeks.
murf -- I'll help any way I can
terryw -- Thank you Murray (murf)
Susannew -- Murray, I know you will. I've already seen your HOPE5 emails
going out to all your friends and family and coworkers! Thank you.
bsofree -- {welcome bsofree}
terryw -- Hi Paul, (Bsofree)
bsofree -- Good morning all, this is Paul Liu
don48312 -- hiya paul
murf -- Hi Paul
murf -- YES!
billeric -- {welcome billeric}
Susannew -- Good Morning Bill.
terryw -- Hello Bill
billeric -- Good morning folks,differnt time zone for me, so I hope I am on time
Susannew -- I was so pleased with the quality of the speakers and their
presentations... what did you think?
don48312 -- great speakers, especially the blond on monday morning. all
had relevant topics and were very knowledgable.
don48312 -- or wuz it grey?????
Susannew -- Don: blushing!
Susannew -- Your in Arizona now? Or somewhere on your way?
Susannew -- How is the trip going?
billeric -- We are visiting our son in Cincinnati at present
Susannew -- Please note: The KDA cannot talk in detail about fundraising
on the MDA site...
bsofree -- Sorry, I am late. Had to prepare box lunch for June bug (my
daughter) before she starts her Chinese class at 9AM sharp. Then, we have
Spanish at 1pm.
Susannew -- Junebug is so busy! Does she have any time to watch tv?!!!
Piano, Spanish, Chinese... She's going to be one very talented individual.
bsofree -- Not really. Could June call you later tonight, so she could
play you a tune?
Susannew -- Paul: Yes... We'll be here.
terryw -- thats fine paul, but not to late ok?
johni -- Any chance of a brief resume of how the conference went, please?
Susannew -- The conference went very well. The speakers all showed up on
time, stayed within their allotted times given, and had excellent
information to impart to the audience.
murf -- Best conference yet!
Susannew -- The Doctors/Research panel was truly inspiring and hopeful and
each organization represented had a speaker talk about their recent
research, findings and future directions. They also took questions from
the audience in the end.
don48312 -- gave mike and paula goynes a summary of the conference. will
do same with john and paulette mengle soon.
murf -- Best part was the researchers learned some things I think
teda -- Very informative speakers and the Doctors and researchers were
very open and available to talk
billeric -- did anything new come from the conferance that we should be
doing or not doing?
bsofree -- Okay, Susanne...I had several conversation with Jean Jacque
from France. With the researchists from Jewish General in Montreal, I
wonder why we don't have any KD contacts in Quebec??
Susannew -- We will have videos available for sale (to cover costs) for
each segment for those who could not attend. (They are begin shipped to us
now as Terry didn't want to take them through the airport x-ray machines -
afraid they would be erased...) And if they came out - quality of audio,
etc.
don48312 -- is patrick still driving his new car back from conference????
Susannew -- Don: I don't know if he's driving back.. but he'll need to car
to haul all his silent auction loot back!
johni -- Is there any light at the end of the tunnel, then?
murf -- I'm in for three
terryw -- I was glad to hear that the doctors found these chat session
transcrips of interest and that they help them understand KD from the
individuals point of view.
terryw -- LOL DOn
johni -- Let us know when the videos are on sale. We want them!
murf -- I forgot to ask anyone about the Dr. Atkins diet. Does any one
know if it's good for us?
don48312 -- murf, my mda doc stated adkins not good for us as can effect
kidneys
johni -- Yes, I have followed it and lost weight.
johni -- Our Doctor said 'Go for it' to me. It is only bad for the kidneys
if you do not foolow Dr Atkins advice about drinking lots of water.
johni -- Follow
murf -- My Dr. put me on it too. Maybe I'll e-mail Dr. fishbeck
Susannew -- The researchers are currently screening FDA approved drug
compounds... if any show promise, we may be able to skip animal testing
and go straight to clinical trials. The doctors believe 5-10 years for a
treatment if I remember correctly - I want to review the video again when
they get here as I was being pulled out of the room for hotel and
housekeeping items...
teda -- I even had the Dr from UCSF testing me right there in the room
after a session
billeric -- I would like a video too, too Susanne
terryw -- Will do Johni.
Susannew -- Bill: They did not talk specifically about what KD individuals
should be doing or not doing. The exercise question still remains.
Although, Bruce Gaughran gave a great presentation on Qi Gong - low impact
Chinese exercise - that has helped him become stronger. Its so hard to say
though as each individual with KD is progressing a bit differently and has
difference signs and symptoms at various stages.
Susannew -- We will email everyone about the videos once we are ready to
distribute. I think it should be about 2 weeks from now...
bsofree -- Any exercise is good, I think. I follow Chinese Martial Art all
my life. Of course, there are many movements I couldn't do now. But, as I
said, any exercise is good. Even, the bending down to pick up after my 2
huge dogs early this morning and most mornings.
don48312 -- susanne, rotfl
Susannew -- Jean Jacques is going to send me the doctors' contact
information in France who are researching KD... we'll add them to our
email list and invite them for next year. We don't know all researchers
who research KD, but the doctors and researchers who attended our
conference I'm sure will continue to let us know about colleagues who they
know do.
murf -- He was very excited about the possibilities of a conference next
year
chuck -- Perhaps Patrick won't have to transport his refreshment purchases
back. LOL He told us he was staying a few days after conference.
don48312 -- i think john did a great job keeping the conference moving
with his 5 and 1 minute sign.
murf -- He may be trying to sell a car LOL
murf -- John did a great job (Standing ovation)
bsofree -- I am just thinking if Jean Jacques could relate to Quebecers.
As you know, Quebec has French as its only official language. English is
tolerated and only a privilege to those with contact with Federal
institutions.
Susannew -- When I walked into the doctors/researchers private symposium
to make an announcement Monday afternoon, I couldn't bring myself to
speak. 25 of them were in a circle, jumping in the conversation with ideas
and information. I could see they were so focused and there was so much
energy in the room. I didn't want to interupt their flow so I simply
whispered my announcement in Daniel's ear so he could tell them at a
natural break.
teda -- It was really an international conference, 5 countries represented
Susannew -- Don: Yes the meeting committee had planned to do that so that
the meeting would continue to move as planned. We were concerned some
speakers would lose track of time. Didn't know if there would be a clock
in the room.
johni -- What countries, Ted?
teda -- Sue says hi to all
Susannew -- John did an excellent job MC'ing for us. He's hired next year!
Although the pay is simply the joy of helping others.
don48312 -- great idea susanne
chuck -- Charlie and I thought the entire conference a TOTAL SUCCESS (and
then to think it was the first KDA that our great Bd. of Directors put
together).
don48312 -- maybe we can give john a 1989 mercury next year for his
efforts.
teda -- Israel, France, Canada, Australia and USA
Susannew -- A huge thank you to all on the meeting committee. We all had
our assigned jobs and we all held up to our ends! Patrick, John, Terry and
Annette - thank you so much!
Susannew -- Canada too.
terryw -- John in the KDA's Ed McMahaen
terryw -- Dont know the spelling
murf -- Karol came in to say hi to everyone but is not feeling well and
back to bed. She got a cold yesterday
Susannew -- LOL
bsofree -- Sorry to disappoint, but I am one person international band.
Born in Taiwan, 12 years in Hong Kong, most of my adult life in Quebec,
Canada and now residing in Sunny California. What I am saying 5 countries
is wonderful. Maybe, we should shoot for 10 next year.
johni -- We must get the video to the Professor at Birmingham University
Hospital. See if we can have the UK represented next year.
Susannew -- I believe the video of the doctors/researchers segment would
be great for anyone to get to show family members, their doctors,
neurologists, etc.
terryw -- That would be great Johni.
terryw -- Tell Karon to get well.
Susannew -- Murray: Please tell Karol I hope she feels better. She
probably caught it on the plane. I always catch colds when I fly.
Susannew -- The other segments were great too. Dr. Gershuni, an
orthopaedist from Israel who has KD, spoke about life with KD and gave
some tips to living with KD.
murf -- I think that's where iot came from
Susannew -- Linda Hamill and Diane from the Social Security Administration
gave an excellent speech about Social Security and Social Security
Disability Insurance for those in the USA
terryw -- {welcome terryw}
Susannew -- Dean Camlin, an architect, spoke about modifying your home for
easier use and gave useful information about ramps, wider doors, etc...
Susannew -- Andrew Sandler, an attorney, spoke to us about estate planning
and things to think about... wills, living trusts, medical power of
attorneys, etc...
terryw -- Paul, you and Murray should talk. Murf gave us a link to his
photos and he has been many places also.
teda -- For future meetings would it be a good idea to piggyback with the
Neurologist Meeting since that is the type of Doctor must of the guys see
(From Sue)
murf -- Paul - are you on the contact list?
terryw -- I am still working on the Conference photos for the web.
Susannew -- Ted: That would be good too... The American Society for Human
Genetics meeting brings in 7-8,000 doctors or all backgrounds to their
meetings including neurologists and researchers. The next time, I'd like
to see us invited Neurologists to attend (but on their own dime) we cannot
afford to pay their way. I'd also like us to invite doctors/neurologists
from around the meeting location (UCLA, Neurologists in general...) I
think we should have done this in Baltimore but didn't get a chance to...
time to get everything done on time.
murf -- Terry - I'd like to send my photos to those on the contact list if
that's ok
bsofree -- Actually, I am just frustrated. You all are trying so hard to
bring the KD community together and yet Quebec still remains in isolation,
in a way. I know McGill University's own nueurological institute expressed
interest in me back in th eighties. Is there any way to reach out to them.
Maybe the link might be through the Montreal Jewish General.
don48312 -- murf, post them so all of us can see them, not just contact
list
Susannew -- The KDA would like to go to the Neurology Association's
conferences and exhibit there in the hall and give information to them.
There are 2 neurology associations in the US... we just haven't done so
yet because the cost of exhibiting is quite expensive. I am working to get
a booth display donated to the KDA for doing this... We wanted to go last
March, but the KDA Board voted against due to cost versus funds raised so
far. But 2003 we really want to do this... again, if we can afford to.
This way we can reach many neurologists... We'd also like to invite
someone like Dr. Fischbeck or La Spada to speak about KD if the neurology
association would make room for that breakout...
terryw -- {welcome terryw}
teda -- Hi Susanne (Sue here)- I let Annette know that I would volunteer
to be on the committee for the next conference so I thought I would let
you know also.
Susannew -- There is so much we want to do at the KDA and time limits us.
I cannot tell you how many things need to be done on a daily basis. If we
can get others to help, for instance, Paul, if you can get me the
information, I'd be happy to send them a note about the KDA...
ms-ronni -- {welcome ms-ronni}
Susannew -- Ted: Thank you. We will be glad to have all the assistance we
can for the next KDA Conference!
Susannew -- Good morning Ronni. How have you been? We missed you at the
conference!
murf -- Hi ms-ronni
Susannew -- We have so many grand ideas, and just not enough resources to
do them all...
murf -- I'll help!
teda -- An idea for a future meeting--The Doctor's meet with KD patients
so that they can examine them, talk to them one on one, KD guys ask
questions of the Doctors, have about a two hour window just for the guys
and Doctors.
bsofree -- Okay Susanne, I am going to Montreal early next month. I shall
visit my alma mater. By the way, you do know George is buried in Montreal,
along with my parents?
teda -- The labels with address, phone number and E-mail were a great
idea!!
terryw -- {welcome terryw}
Susannew -- Ted: That's a great idea. Again it might come down to a timing
issue... If the conference grows like it has been... it went from 6
individuals to 17 last year to 67... Next year could very well be in the
200 mark... We'd have to figure out how to do it. Perhaps a group
discussion with the clinicians. Many of the researchers who spoke do not
see patients. Their research is done in the lab.
Susannew -- Paul: No I did not know that about George. We still want to
put together a memorial page for the KDA site, but just haven't had the
time... on our list to complete soon.
murf -- Terry - are you having computer problems?
Susannew -- Ted: I'm glad you liked that idea. It makes it so much easier
to give out your information, and only to those you wanted to.
Susannew -- Yes, our DSL line keeps cutting out for him. I'm on a modem...
hah! Chalk one up for slow but stable!
teda -- The last 5 minutes were Sue sitting in to add her comments
bsofree -- Yes, George passed away in Hong Kong. But, Susan (my sister in
law) decided to take him back to Montreal to lay to rest next to my
parents and me (God's wish).
Susannew -- We will also be working on a 2002 Conference page for the site
with photographs, information, etc. over the next couple of weeks. We'll
let you all know when its complete... In the meantime, you can always go
to the site: www.kennedysdisease.org
terryw -- I have been booted 2 times now in this room. I rebooted the PC
and am back now.
Susannew -- Thanks Sue!
Susannew -- How did you all like meeting others with KD?
Susannew -- Did you find that part of the Conference valuable?
Susannew -- I know the wives were glad to meet each other. We face so many
of the same issues.
terryw -- It felt to me like one big family.
murf -- On a different topic: I picked up my new van yesterday and paid no
state tax plus got a $1000 rebate from Toyota! That pays for the new lift
which will be installed on the 25th.
don48312 -- was nice to place faces with names. had many great
conversations with other KD'ers
teda -- Meeting with other KD was very good, could have used more time,
but then we did share at breaks and meals
terryw -- Murray, it sounds like you are all set.
Susannew -- How did you get no state tax?
johni -- Janet and I would love to meet others in our situation. We may
contact other KD'ers in England and see what they think.
don48312 -- boith GM and Ford offer $1,000 disability rebates. Crysler
offers $750.
ms-ronni -- I took a peek at the chat. I would have loved to have gone to
the conference. It just wasn't possible. Ill keep tabs on info for next
year. Anything of interest for carriers?
terryw -- Murray, I am gonna rev up my chair so I can do 8MPH for a race
with you next time.
bsofree -- I found the part about Bulbar most interesting. If I only have
the chance to let the good doctor from Australia scan me. Cuz both my
brother and I could talk all day. But, mobility is a problem. I envy the
brothers from Chicago of Japanese decents. They could walk circles around
me without a cane?
murf -- I can now carry my 4X4 chair anywhere :-)
Susannew -- We're thinking the next conference should be 3 days... this
allows for more time to get to know each other in the evenings and also,
close the meeting on the 3rd day at noon - this way everyone can catch
flights and not have to leave without seeing all sessions.
terryw -- It would be great to meet you johni.
murf -- Terry: you're on
don48312 -- frank, is that u?
Susannew -- Ronni: Jennifer Lieb from National Instutes of Health (NIH)
did a great presentation on Genetic Inheritance and Counseling...
johnm -- {welcome johnm}
terryw -- Murray, I am gonna have the tool time guys give it MORE POWER.
murf -- Terry: which one?
terryw -- Hi Johnm
ms-ronni -- Can I get a video or tape on the pres.
don48312 -- hi john
johnm -- Hi All.
terryw -- Murray, like the TV show I meant.
teda -- Terry - then back to the shop for repairs :)
terryw -- Its in the shop as we speak.
murf -- Hi John
Susannew -- We will be selling videos for a nominal cost of each of the
sessions. They are being shipped back to us... We have to make sure they
are fine (audio quality) before we make them available... We'll be
emailing everyone once they are ready.
terryw -- I am having a HEMI engine with a Blower installed.
Susannew -- Good morning John. Glad you could join us.
murf -- Terry: I have to now install bumper pads on the walls of the house :)
Susannew -- David Dukeheart from Merrill Lynch and Todd Mitchell from Legg
Mason both talked about Financial planning and things to consider.
terryw -- LOL Murray, Murf needs a driving school for that fast chair.
ms-ronni -- Susannew, will watch for notice. Very interested
don48312 -- judy says hi to all
terryw -- Hi Judy.
don48312 -- did murf buy the red chair at conference?
murf -- Sussanne: 3 days would probably be better for all of us. A slower pace
terryw -- No Paul, Frank bought it.
Susannew -- No the red chair was bought by Frank.
murf -- Don: No I bought an Invicare Xterra GT (off road model)
don48312 -- susanne, what did u call the "dry drowning" condition at the
conference??
bsofree -- Could you have Frank contact me for instruction manual, etc?
terryw -- Yes Murf, we need a 2 hr siesta break for lunch
terryw -- Yes I will paul. thanks
don48312 -- i c
murf -- I got a great picture of Frank in his new chair
Susannew -- I was thinking about how tired I was at the conference anf
felt badly that we had planned such an aggressive schedule... those
affected by KD must have been ready to rest around 1:00... I was thinking
next time, we could have a "siesta" break and come back around 2:30 p.m.
and go later into the evening? Just a thought...
terryw -- Yes, that is a good one Murray.
don48312 -- just found frank's aol name, tu
Susannew -- Hello Judy!
bsofree -- Anyone needing more info about the red chair, please feel free
to contact me?
murf -- Hi Judy
teda -- 2 hour lunch and spread the conf over 2 1/2 days would be good
don48312 -- i am just getting rested and back to normal from the
conference. yeppers susanne, a daily nap is in order, lol.
murf -- Sounds like we're planning next years conference! Great!
chuck -- Susanne being the "old" ones in attendance - I like the idea of
the rest. Charlie was exceptionally tired but we had a housekeeping
problem at the hotel. We phoned 3 times to get housekeeping in at 5PM. He
went up to rest but didn't since they hadn't been there.
teda -- Just need a date and location!!
Susannew -- Meir Raskas from Advanced Medical Concepts gave great
information about Mobility Aides and Options. Things you wouldn't think
about.. like when buying a wheelchair, plan for the future, think about
who's pushing you... for instance, when Terry bought his manual chair, he
just bought it... didn't know to think about me. I push him and the
handles are too low, I get a backache from bending over... things like
that to think about.
don48312 -- could our chat nicknames be included on the labels next year???
murf -- Hi Chuck: This is a problem with most hotels, ask me! We should
tell our needs to the hotel management up front I think.
terryw -- thats a good idea don.
Susannew -- Chuck/Anna Lea: I'm sorry about that... I didn't know. The
Marriott did an amazing job for us in the conference meeting room and
dinner. I know there were a couple of mishaps with handicapped rooms too.
They had given one away to a Mary Kay attendee, but she agreed to move.
Susannew -- Don: We'll try to remember. Details, details, details!!!
johnm -- Sounds like everyone had a good time at the Conference.
bsofree -- Susanne, that's why we come up with the Add-on unit. It could
convert most manual chair to electric power chair. Actually, the red
transport chair at the silent auction was purchased by yours truly in
Covina, CA. But, we do make the power drive unit.
terryw -- And next time we will make sure Mary Kay is NOT at the same
hotel LOL
don48312 -- lol, dont envy u 2
chuck -- Don't mean to complain but something we could think about in
future. All else was find.
Susannew -- The banquet/meeting department did know a group with chairs
and canes was coming in. They asked me all kinds of questions so their
staff would be prepared. But one thing you have to do when making your
reservation is stress your needs, and get their name! You might even call
the hotel manager ahead of departure time and confirm your needs.
teda -- Even before next year we could do an e-mail with chat name, real
name and which state/country each is from and add as new chatters join in.
I volunteer to do this
murf -- Susanne : you did a great job and don't let anyone tell you
different. My hat is off to you. Thank you
murf -- adding a chat name might encourage the chat attendence
don48312 -- yup, great job, susanne, terry and meeting committee
murf -- My electrician just got here
terryw -- Chat is good for us
Susannew -- Thanks Murray. I think all-in-all it went very well. No one
has said it wasn't good - my biggest worry! Everyone that I spoke with was
very positive about it, stated how well organized and put together it was.
I think it really exceeded a lot of expectations... now... the trouble for
next year - we have to meet those expectations and better it! The
challenge is on.
Susannew -- Bye Murray. Take care.
teda -- 3 cheers to Susannne and Terry for a job well done.
Susannew -- Thanks. We had a great meeting committee and team!
billeric -- I am sure those of us who missed the conferance, lost out. You
can bet we will try harder to attend next year.
terryw -- Dont forget the others
don48312 -- yes, drinking a toast to T & S right now. will drink another
toast later
chuck -- It was far more than we had anticipated.....
Susannew -- We toast new friendships and sharing of information to better
our lives.
johni -- Yes we feel we missed out, not being able to go. But financially
and practically we have no chance!
Susannew -- Next year John! Start saving now!
teda -- Yes the others helped a lot but it was your leadership that made
the difference
terryw -- If we win the big Lotto we will fly everyone in next time.
Susannew -- We also had thought about, if we can afford it, perhaps
sponsoring a couple of KD individuals to come in to the conference. Those
that cannot afford to attend. Again, I always feel that the information we
gather should be available to everyone!
bsofree -- Have to go. June wants to go to her Chinese class and will call
you all tonight. Again, thanks for putting together a great KDA
conference. Hasta Luego.
terryw -- Bye Paul
Susannew -- Hasta Paul. Que tenga un buen dia!
murf -- I'm back Bye Paul
Susannew -- We have 15 more minutes...
Susannew -- Did you all get a chance to talk with the doctors/researchers
during the dinner banquet?
teda -- Have to be in class also at 9, bye to all and again thanks for a
successful time in BWI
Susannew -- Have a good day Ted and Sue.
teda -- {goodbye teda}
murf -- Bye Ted and Sue
Susannew -- We also would like to have a formalized social event at the
next conference... optional of course, but maybe a day at the races or
something...
Susannew -- Disneyland?
Susannew -- Oh, everyone would hate us... when you use a chair at
Disneyland, you get to go right to the front of the lines!
murf -- How much do we need to get a mouse model and sponsor two couples
for the conference, can we set a goal here?
johni -- Looking forward to the videos. It was good chatting. Gotta go
now. Take care all.
terryw -- bye johni
Susannew -- Take care John! We'd love to meet you in person sometime.
We've been invited to Paris by Jean Jacques... if we go, we'd also love to
come to England!
chuck -- Yes, we did. We also feel so fortunate to see Dr. Fishbeck, Dr.
Sumner, Jennifer Lieb in their lab. We also met Dr. Kennedy there the last
time we were there. This is also due to our geographic location. Of course
Dr. Ravich and Kim Webster at John Hopkins...
don48312 -- Vegas?????????
murf -- I'll be driving in so will have my 4X4. Rase ya to the front of
the line Terry.
terryw -- Don,, always trying LOL
murf -- Bye Johni
johni -- {goodbye johni}
Susannew -- We did invite Dr. Kennedy - I spoke with him on the phone. He
is such a nice man. Unfortunately, we invited him too late and he had to
be in California for his grandchildren's baptisms... Next year though, I
believe he might be able to make it!
terryw -- Maybe we should put a slot machine up at the next silent
auction, or 2 tickets to vegs. I bet don would outbid everyone.
don48312 -- gotta go gang, luck 2 all, bye from Judy and I
terryw -- Vegas
Susannew -- Hmmm.... Vegas....
terryw -- Bye Don/Judy
Susannew -- Take care Don and Judy.
murf -- Bye Don & Judy
Susannew -- Terry: that's a great idea!
murf -- Vagas would be good but can we get Doctors and researchers there?
Susannew -- We wish we had had more time for the wives chat. We had really
got going when time ended...
Susannew -- We'd love to do a cruise... Maybe not a conference, but a
planned KD get together.
murf -- Susanne: lets set one up, Karol would enjoy that
Susannew -- Ok, Murray - your elected to look into it!
murf -- We wives chat I mean:)
ms-ronni -- Well, i can only say Bye for now until next time. Glad the
conference was a success(I knew it would be) Start saving now for next
year.
terryw -- Murray, we are going on a eastern carribean cruise Jan 29th
2003. If you or anyone wants to join us its not to late. e-mail us for
info
johnm -- {goodbye johnm}
murf -- Bye John
Susannew -- Yes, the wives will get together via a Yahoo chat that will
not be transcribed so we can talk openly... this has to be planned. Terry
has to tell me how it works so we can share with everyone else. We'll have
to set up a private chat room and everyone will have to get logins... NO
MEN ALLOWED!!! Sorry!
murf -- That's great. Please send Karol details. Now about the cruise?
terryw -- 2 min warning
chuck -- Bye for now. We certainly fell we made some great friends.
murf -- Bye Chuck
billeric -- Thanks Terry and Susanne, We are really fortunate to have you
two working so hard for all of us. It is appreciated.
Susannew -- Researchers talked about a recent finding that testosterone
can aggrevate functions with those with KD. Interesting finding. Too much
testosterone and too little testosterone could be bad. They are still
looking into this in their drug screenings.
murf -- Hear Hear!
terryw -- You are welcome Bill
Susannew -- Take care everyone! Have a great weekend. Off to do
post-conference items.
murf -- Bye all
chuck -- {goodbye chuck}
ms-ronni -- {goodbye ms-ronni}