Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"You are not alone in your quest for a treatment and cure!"

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 - July 27, Open Forum

Kennedy's Disease Chat Transcript 07-27-02

Topics: Open Forum/General Discussion

Host: Bruce Gaughran

Chat Participants:

terryw
bruce
rea
susannew
ms-ronni
don48312

johni

chuck

john-c

bsofree

daveg

BEGIN CHAT

terryw -- Hello Bruce
rea -- {welcome rea}
rea -- I made it
terryw -- Hi Ruth
bruce -- Good Morning, Terry. I had trouble getting to the KD website
again this morning. I had to go to the MDA chat room direct.
terryw -- Yes, the site provider is having router problems. If this
continues we may have to move the site. It's been being hosted for free
but now maybe it's time we have to pay.
bruce -- Hello Ruth
rea -- hi
bruce -- Ruth, are you getting the storms up in NY this morning?
rea -- not yet but it is coming
bruce -- We need the rain bad in Pennsylvania. It wouldn't hurt us to have
rain for a day or two.
rea -- last summer I had a generator, but no bad storms like this summer
terryw -- I hope you get some rain back in PA. I want those fountains
working at Longwood gardens in Oct when we come. they have them shut off
now due to the drought.
bruce -- Terry, I am certain Longwood Gardens is felling the pain from the
lack of rain. By October, things should be much better.
terryw -- Bruce I get a monthly newsletter from Longwood with updates.
rea -- is everyone here going to Baltimore
terryw -- I know we are.
bruce -- Ruth, Cindy and I plan to be there this October.
rea -- I hope to be there, but will stay with my brother
terryw -- We have many registered for the conference already and 22 are
already signed up for the dinner the night before the conference.
terryw -- things are really gearing up should be a great conference and
good time for all who attend
chuck -- Plan to get check off to you this week Terry....
bruce -- Cindy and I saw "The Road to Predition" last week. What a great
movie. We both really enjoyed it.
rea -- I went to a Broadway play with my girlfriend
rea -- saw 'The GOAT'
terryw -- was it good?
rea -- it was by Edward albee
rea -- weird
rea -- but it was good
rea -- about a man falling in love with a goat
terryw -- LOL Ruth
rea -- go see it

don48312 -- {welcome don48312}
terryw -- Hello Don
bruce -- Welcome, welcome, welcome, Don
rea -- hi
terryw -- Don did you get your registration packet we sent you yet?
don48312 -- we received no registration packet, terry
don48312 -- good morning all. terry, do we have to sigh up for the Sunday
dinner in Baltimore?
terryw -- Don we already have you as attending the dinner, No worries
don48312 -- tks terry
chuck -- {welcome chuck}
bruce -- Welcome Chuck
terryw -- Hi Chuck
bruce -- Terry, what else do the two of you plan to do while in Baltimore
this October?
terryw -- Bruce, we are coming in on Friday and plan to do the gardens on
Saturday, and some other sight seeing Sunday morning at the inner harbor
then some conference planning stuff on sun afternoon prior to the dinner.
bruce -- It will be great to attach "faces" to the "names"....
don48312 -- we sent out registration check in this week terry
terryw -- Don we mailed your packet last week. Email us next Friday if you
have not gotten it yet
bruce -- You'll love the Inner Harbor. It was one of our favorite places
in Baltimore.
terryw -- We got your check don. Thank you.
terryw -- thank you chuck
don48312 -- terry, have no idea what a registration packet is?
terryw -- Don, Its a packet we put together that we mail out to
registrants with a lot of info on the conference and area.
don48312 -- gtcha, will let u know if we don’t get it.
bruce -- Terry, we really appreciate the work Sussane and you are doing to
get this thing off the ground this year. I know it isn't easy, but it
should be worthwhile...
terryw -- Thank you bruce. We appreciate the comments.
terryw -- Ruth you need to get your registration in to us before the 15th
of Aug for the discount.
rea -- terry, I might just be able to stay the day
rea -- I am trying to get off work for 2 days
rea -- I really just want to meet all of you
rea -- terry do I have to register?
terryw -- Ruth, the registration fee will be $62.50 for the one day if you
plan to attend do to food catering etc.
terryw -- Yes Ruth you still need to register.
rea -- OK can u e-mail me the registration
rea -- will send u a check
bruce -- Well, I am showing 10:32. Does anyone have any particular topic
they would like to discuss today?
ms-ronni -- {welcome ms-ronni}
terryw -- Hi Ronni
bruce -- Welcome to the chat Ronni
ms-ronni -- hi everyone just wanted to see what’s going on
don48312 -- I read the article on Kennedy's Disease in the "Quest"
magazine, and I thought it wuz great. Gave me hope for a treatment or
cure!!!
rea -- wish it could have been sooner
rea -- I read it also
bruce -- Yes, Don, I have copied that article and sent it off to a bunch
of people - family, friends, etc.
don48312 -- I still have one golf club, I plan to use some day>
terryw -- Don, If I swung a golf club I would fall over.
rea -- lol
rea -- terry putt
terryw -- I think so also don. gave us all hope.
bruce -- It was probably the most optimistic piece I have seen on the
subject.
bruce -- I am hoping we will here some more good news at the conference
this fall. With the researchers getting together at one time - who
knows what might come out of it.
don48312 -- be4 I knew I had problems, I started falling on the golf
course. friends thought I wuz drunk, lol.
bruce -- Golf courses are tough - the up and down, the amount of walking
and sand traps are really traps!
bsofree -- If I may cut in Bruce. Ortho Kinetic makes a single person golf
cart for the mobility challenged.
bruce -- Bsofree, thanks. Perhaps you could send me the website for the
product? What can I call you besides BSOFREE?
bsofree -- Bruce, call me Paul & ask Terry for the link.
bruce -- Thanks Paul.
terryw -- The link for the mobility device that Bsofree speaks of is on
the main page of the web site.
bsofree -- {welcome bsofree}
terryw -- Hi BS
terryw -- hi Bsofree, where are you from?
terryw -- Bsofree. Are you a person diagnosed with Kennedy's Disease. also
where are you from?
bsofree -- Yes Terry, I am here but for the record. I live in Los Angeles
and I HAVE KD.
terryw -- Paul, I did not know that that was you. I understand now.
terryw -- rea ?
rea -- yes
terryw -- Oh I understand Rea,, I am a bit slow this morning
rea -- to early for u
terryw -- Rea, I am an early bird
don48312 -- <------ night owl
bruce -- Welcome B
johni -- {welcome johni}
terryw -- Hi Johni, where are you from?
bruce -- Welcome John
bsofree -- Hello everyone. Paul Liu finally got in the chat room. Thanks
Terry for the link.
johni -- Hi from England!
john-c. -- {welcome john-c.}
terryw -- Glad you could join us Johni. Are you a KD person?
johni -- Yes I am. I am a member. This is the first time in the chat room.
don48312 -- there are now 3 of us with Kennedy's residing in Sun City
center, FL
bruce -- Don, that must be great to have others that can you can associate
with.
don48312 -- it is nice bruce, to see John and Mike on a regular basis. we
do discuss the effects of the disease often.
don48312 -- hi mate
rea -- anybody close to New York besides Bruce

daveg -- {welcome daveg}
bruce -- Welcome Dave
terryw -- Hello Dave
terryw -- Hi Paul
bruce -- John, this is an open forum today. No specific subject. IS there
anything you would like to discuss?
johni -- Yes, I am interested in finding people who may have originated
from Ireland, which is where I have traced my KD ancestry to.
bsofree -- Johni...& I thought KD was an Asian thing. LOL....
bruce -- John, that is a good question. My mother's family came from
Germany. I have had similar questions of her family.
bruce -- John, the problem I have had researching this is that the family
was never diagnosed with KD. They just made comments that such-in-such
died young and he was in a wheel chair a long time.
johni -- I wondered you see, that this might lead back to just one source,
eventually.... Although I know that it can also just turn up in someone
without it having been passed on genetically.
don48312 -- johni, how do u know that KD can turn up in someone without
being passed on from a mother?
don48312 -- or a father?
don48312 -- or the milkman?
johni -- I was told by the doctor that it can come in two ways,
genetically or just turn up in an individual. He said it had to start
somewhere!
john-c. -- good one Don
ms-ronni -- Ours was passed on from Grampa on Mothers side. Both Daughters
were carriers...Passed on to all their children 7 total. 2 girls, 5 boys.
passed on to 5 more girls Our family is from Poland. Still living
relatives. No one knows of anyone being in wheelchair etc.
bsofree -- I can easily traced back 13 generation, then some. but beyond
early 1600-research would have to be done in China, where my ancestors are
from. No, symptoms of KD mentioned anywhere, mother or father's side.
don48312 -- paternal grandparents = German, maternal grandparents = polish
bruce -- Paul, that is the same problem I have had. We have a family tree
that goes back several hundred years, but no records of anything like this
disease.
don48312 -- love beer and kielbasa
ms-ronni -- way to go
susannew -- As we understand it, the gene is passed on from a mother with
the KD gene to son or daughter (each have a 50% chance of inheriting the
affected gene). Fathers with the gene cannot pass it on to sons because
they get only the Y chromosome from the father and their X from the
mother. KD gene is located on the X chromosome. However, a father 100%
will pass it on to his daughter who becomes a carrier because she gets an
affected X from her father and an unaffected X from her mother.
don48312 -- that is my understanding Susanne
chuck -- Susanne, that is exactly the way NIH explains KD. It has only
been in the last 15-20 years that they pulled the KD strain away from ALS.
Before that it was so often diagnosed as ALS. daveg -- Bruce my ancestors also cam from England/Scotland I think
many of the KD'rs around the world could come from one or two common
ancestors.
bsofree -- daveg..my brother also had KD. & when he visited Dr. Kennedy
himself, he was told KD is most common with American Indians, or Asians.
johni -- Yes Daveg I wondered that.
bruce -- I hadn't heard about the American Indians before. That is
interesting?
rea -- my husband's family is from Greece
rea -- we got as far as his uncle Mother's brother
rea -- but he died of a heart attack
bruce -- Has anyone been able to trace this disease back more than one
generation?
johni -- Yes I have got back to my great grandmother who came to Liverpool
from Ireland in the 1860's
terryw -- I am German/English
bruce -- I picked up all the good traits - Stubbornness from the German
side. A temper from the Scott/Irish side.
john-c. -- Same??
susannew -- We have also heard discussion that a new mutation can occur
though. Rare. In this case, KD starts in a family without previous family
carrying the gene.
terryw -- I believe that KD has been know in the far east for many years.
johni -- It is because I have done a lot of work on my family tree that
When I found recently that two distant cousins have KD, it was a simple
matter to work out who had passed it on in each generation. There is no
record before this generation of any diagnoses.
john-c. -- Good AM from wet MD-1st rain in a L o n g time
bruce -- John, send it our way please - we need it.
susannew -- {welcome susannew}
susannew -- Good morning! Sorry I'm late. Was up too late last night.
john-c. -- It will be good to finally see a bunch of you in person in
Baltimore. How many of you are signed up??
don48312 -- <---- coming to conference with wife
john-c. -- Paul, are you coming to the conf?
terryw -- I am going Paul
bsofree -- I hope so, but I really don't know yet.
john-c. -- Southwest still has GREAT $$, but only for about 5 more days.
susannew -- We have 22 KD individuals and family members now signed up.
Have another 20 who have expressed strong interest where we do not have
registrations yet. Have about 12 KD researchers/doctors and 3
post-graduate students with interest in KD. Maybe more, Just waiting to
hear.
bruce -- Hello Susanne
bsofree -- Hello Susanne...is your meeting with Susan Liu Wed a girl
thing, or could Terry & I join in????
susannew -- No, Terry and you are welcome to join us. We are meeting at
Gladstones in Malibu... thought that would be good - 1/2 way for her and
1/2 way for us.
john-c. -- sorry folks, but I've got to run...continuing hospital duties
for Mary's mom. Don't take too long to make up your mind, all of you who
have not registered yet. Don, LOL! Wish I could hang around longer today.
bruce -- Thanks John for joining us today.
john-c. -- {goodbye john-c.}
daveg -- Sorry having trouble with a temperamental keyboard - doubling up
on letters.
don48312 -- daveg, kick the keyboard between the "as" key
daveg -- It is the only 'as' I can kick any more Don!
bsofree -- bruce...there is always the rumor, that First People originally
came from Asia.
susannew -- We have heard that in Japan, they have known about KD for 200
years. That in Japan there is one town/area that has 700 KD individuals.
They are being studied by researchers from University of Nagoya (sp?).
rea -- yes Tommy was diagnosed with ALS at first
bruce -- Walked across into Alaska, right?
chuck -- Oh, I didn't realize that Susanne. rea -- lol
bsofree -- Bruce...right on...
bruce -- Now if we could get the 700 to sign up, we could really have a chat session.
susannew -- Misdiagnosis of KD seems to have been so common, About 70% of
those who have joined the KDA have told us they were previously
misdiagnosed with ALS (Lou Gehrig's Disease.) What a terrible thing to
have to go through. Both emotionally and financially. That is another
reason why the KDA has in its mission to help raise awareness of KDA
within the medical community.
chuck -- AMEN!!!!!!!
rea -- Susanne it was more emotional
rea -- when he did not die that was when they said no ALS but SMA
susannew -- Yes Ruth. I can very much see what you and others must have
gone through. And I feel so much sorrow for you.
susannew -- We still plan to do a mailer to 12,000 neurologists, have a
KDA brochure being designed right now by a volunteer who runs a graphic
design firm. Once we have that complete we will ask for a printing company
if they can print for free or nominal charge.
bsofree -- Susanne...talk to me about printing later. I might be able to help.
susannew -- Thanks Paul (bsofree)! We will. We always need those
connections!
ms-ronni -- Great idea on the brochure Susanne. Just recently encountered
a DR with no real knowledge
johni -- Yes, raising awareness is so important. It is good to know that
research is happening. I have a cousin who is a carrier, she is trying to
find a way to tell her adult children about the potential in their
situation.
don48312 -- in Baltimore, we can ask the researchers about KD just showing
up in someone, without having been passed on from parents!
rea -- I have encountered a lot of those doctors in New York
don48312 -- lol, daveg
ms-ronni -- johni have her email me.
susannew -- Ronni - each one of us is a walking brochure! We can help
educate doctors when we go into clinics and talk with med students at
University's if visiting an MDA clinic. Make yourself available for
questions. Help spread the word about KD!
bruce -- This week I received an email from a gentleman in India with
Adult SMA. Very similar, but the bulbar and leg strength is good. Many of
these health issues are similar in nature, but still different enough to
make it difficult to diagnose. Thank God for the blood test.
ms-ronni -- It is funny telling a DR what he must do or what test to run
rea -- YES BLOOD TESTS
susannew -- Heck, most of my clients in the insurance industry
(agents/brokers/wholesalers,csrs,etc.) know about KD. I talk about it with
everyone. I pity the person who has to sit next to me on a 4-hour plane
flight. They don't leave without a thorough review and test before they
deplane!!! : )
bruce -- Remind me not to fly with you, Susanne
johni -- ms-ronni your e-mail address please.
ms-ronni -- This e-mail address is being protected from spambots. You need JavaScript enabled to view it
susannew -- Yes, I agree. Neuro-muscular diseases are very hard to diagnose.
rea -- ms. ronni I know all about telling doctors what to do

chuck -- Susanne, would MDA help KDA any financially???? Also, remember
when Charlie went to NIH for "pictures" - they were going to be put in med.
students textbook....If we can get the upcoming students educated in this
area will be of great value I believe.
susannew -- Chuck: The MDA is a separate organization from the KDA and has
their own mission and objectives. Financially they are supporting KDA
research, but I do not know how much. I know they raised over $50 million
in their telethon...
susannew -- I think it was 1999 that I saw they funded $200,000 in KD
research. I don't know what the number is today. Its probably more. They
also support research into other diseases that may help KD if there is a
breakthrough. Such as Huntington's Disease. This is very close to KD (at
the molecular level I've been told). ALS is more similar in a
symptom/signs nature.
chuck -- Our local medical Dr. is so interested and involved due to
Charlie. She does stay in contact with his Dr. at John Hopkins. There are
four Drs. together so that is good. Yes, I realize MDA is a separate org.
- but they operate the clinics in major hospitals - just a thought.
terryw -- I need to take my wheelchair in for a tune up. The MDA helps me
with that I think its either up to $200 or $300 per year that they will
pick up the bill. Thats a great help.
bruce -- Yes, I believe both the MDA and KD serve a purpose. I appreciate
the general services and support from the MDA. On the other hand, I
appreciate the focused effort of the KDA.
susannew -- Thanks Bruce. That's exactly how I see it. The MDA is a great
organization. However, we still felt like we needed to talk with others
who have KD, gather detailed information about KD, etc. etc. and that's
what has become www.kennedysdisease.org We have been told the information
and support is very helpful from so many who have emailed. Especially
those who are recently diagnosed. They can get information that Terry and
I and probably you could not when you were first diagnosed.
don48312 -- susanne, doesnt terry have 2 sit next 2 you on a 4 hour flight
from LA 2 Balt?????
terryw -- For those of you who like to fish I found out some great
information that may apply to where you live also. The fish & game
department issues Fishing Licences to disabled individuals FREE of charge.
CHeck with your local F&G office for the form. Also all mational parks you
can get into in the USA free of charge for your whole car load. you just
need to get the pass at a national park office and show your disabled card.
bruce -- Thanks for the info, terry. That is good to know.
terryw -- I just got my fishing licence back in the mail. that saved me $40.
johni -- My doctor has screened all of her existing and new patients for
KD after she learned of my earlier misdiagnosis
terryw -- National
susannew -- We all look up to doctors and respect them. However, they are
human and there is so much that can go wrong with the human body. When I
first met my primary care physician, I told him about KD. Terry wasn't
with me. I was just there for a physical. He was surprised he'd never
heard of it and was glad that I went over some tell-tale symptoms with
him. I also gave him the Web site address and he did come and visit.
rea -- I have to leave, susanne or terry please e-mail me theabout sending
the money for the registration
susannew -- Yes, Ruth we will. Thanks for coming!
rea -- hope to meet all of you
don48312 -- tc ruth
rea -- bye
bruce -- By Ruth
terryw -- bye ruth
johni -- Bye Ruth
bsofree -- bye Ruth
johni -- Is anyone out there having trouble with their neck. I am. I have
difficulty holding my head up sometimes, and have to wear a special collar.
terryw -- Johni, my neck gets tired sometimes but not to the extent that
you seem to have. Do you sit in a chair that does not support your head
for long periods?
don48312 -- johni, i have that trouble at times
bruce -- Terry, you bring up a good question around neck strength. As
anyone else having problems with their neck strength?
johni -- Yes, I suppose I do. My wheel chair becomes the front seat of the
car, and like a car seat it has a head restraint, not head rest. I am
currently waiting for a wheelchair assessment so that something can be
done to the wheelchair to address that problem
terryw -- I try to rest my head back on the headrest of my chair. that helps a lot
daveg -- John I have to be careful not to turn my head quickly otherwise I
get a sharp pain in the neck which takes a while to subside
terryw -- Is that called a wife Dave? LOL
johni -- Yes ditto daveg
don48312 -- lol, terryw
johni -- I had better be careful terryw the wife is with me at the moment.
She is doing the typing, being faster than me
terryw -- I see Johni.
daveg -- Hi Terry, this is Dave's wife Liz typing for him, not only is my
neck faster but so are my fingers so be careful with those wife
jokes....lol
terryw -- Ooooops,, I'm in trouble.
susannew -- Ok, now I see - Terry.... ha ha!!! You should be so lucky if
all I was was a pain in the neck!!!
terryw -- I could not name the other part.
terryw -- LOL
susannew -- Terry: Good thing you are downstairs... my legs won't reach
that far to kick you!
daveg -- Do you do a lot of fishing Terry? I find it is something which
requires too much bending and kneeling
terryw -- Dave I have not fished that much in the past year or 2 but I
plan to start again. I will fish from my wheelchair at the dock or shore
where I dont have to bend. Tying knots now with my fingers is a whole
different story that I need to figure out.
don48312 -- MDA operates free medical clinics for MD diseases, operated
summer camps for children, and is involved in numerous research projects.
bsofree -- Got to go now, meeting a client for breakfast. Will see Terry &
Susanne coming Wed?
terryw -- bye paul
bruce -- Bye Paul. Thanks for joining us today.
ms-ronni -- susanne hows the response on the Carrier email?
susannew -- Ronni, I've received about 5 emails back from the 12 carriers
I emailed. I was going to put them together and send them to you in Excel
format. I will work on that this afternoon and send to you. Most wanted to
not publicly share on a carrier list, but did not mind sharing their email
addresses with you.
ms-ronni -- That is some progress Thanks
susannew -- Not only those affected with KD symptoms need support. Wives,
family members and carriers do also! That's why we've started support
groups for Carriers - Ronni is the Carrier Support Coordinator. And the
Wives/Significant Others SUpport Group - Paula Goynes is coordinator for
that group. We need to be able to open up and talk about things we
normally wouldn't in front of our husbands or families. So if you are
interested in Carrier support group - plesae email Ronni - Ronni, please
give you email address. If you are interested in Wives support you can
email me for now at This e-mail address is being protected from spambots. You need JavaScript enabled to view it . I think Paula is in the middle of
a move right now to another state and her email may not be up just yet.
bsofree -- Welcome Bruce and a blessed day.
bruce -- Terry is always this question, so I will ask it today. "What
other topics would you like to see discussed on the Saturday chat room?"
terryw -- We need to come up with some new stuff bruce.
don48312 -- I would like a speech therapist to make a presentation to
those of us who are effected in the bulbar region of the body.
ms-ronni -- Available with Carrier support at This e-mail address is being protected from spambots. You need JavaScript enabled to view it
bruce -- Thanks Don for the idea.
susannew -- Good idea Don. We'll see if we can find one that would be
willing to come on the chat. Does anyone go to a speech therapist that we
could approach to come on. Better if they are familiar with therapy for
those with KD...
daveg -- Bruce I think we can go back over topics we have discussed
previously and see how people are coping aand if there have been any new
discoveries or new techniques to cope with things.
johni -- I think its a great idea to hear from a speech therepist. I had
considerable help from a speech therepist. It really helped. She advised
on breathing , posture, and speech exercises. She was excellent.
don48312 -- i think i might knoiw one susanne, and she is interested in KD!!!
susannew -- Great Don! Please ask her what she thinks and if she's
interested, email me!
don48312 -- will do susanne, and ill get back 2 u.
chuck -- Susanne, I wonder about contacting John Hopkins for a speech
therapist?? Charlie went to a Kim Webster there who helped him and then
referred him on for the throat dilation. I was thinking it is local to our
meeting area....
susannew -- Yes, some of our older topics can be revisited, especially now
that we have new individuals joining the chats. New ideas and points of view.
terryw -- I think a good topic would be "over doing it" and how not to.
johni -- Hi Liz, daveg's wife, from Janet Johni's wife
susannew -- Go Liz!
ms-ronni -- The wives take control...watch out guys. Gotta go let out
Buddy he as to ---. Have a great weekend bye
daveg -- Hi Janet, we should form a secretaries group
chuck -- Here is another wife playing secretary....You guys better
straighten up......
susannew -- See - we are stepping out from the shadows now!
bruce -- Thanks Dave and Terry. So noted.
terryw -- Am I the only guy typing for myself LOL
bruce -- KD'rs of the world UNITE. Take control of those keyboards again.
johni -- This is only one of my wife's many talents, so she tells me
susannew -- Bruce: LOL
bruce -- It is 11:27. We have until 11:45 before the chat room time ends.
susannew -- Bye Ronni. Thanks for coming.
don48312 -- take care all, gotta go. c u all in balt i hope
terryw -- bye don
bruce -- Bye DOn and thanks

susannew -- How about the idea of "vacations with KD" again? Its good to
know which places around the world are good to visit and are easily
accessible for those with KD...
terryw -- Sounds good Susanne
bruce -- Got it down, Susanne, thanks.
don48312 -- {goodbye don48312}
susannew -- We are considering going on a cruise... never been before -
would be good to know from others how that experience was.
johni -- I have been told that it wopuld be ideal for me, but I still
cannot find the courage to find out for myself
bruce -- Susanne, I'll talk to my brother. He has been on a couple of
crrises and faired very well.
susannew -- Bruce: got it down?
susannew -- Anna Lea (Chuck) it would be good to talk with her if she is
interested in attending the KDA conference in October - we have a spot
we've been trying to fill and she could have that time frame... Would you
like to talk with her and put her in touch with me? Thanks so much!
susannew -- All our speakers are coming on a volunteer basis - so we
cannot pay her for her time...
chuck -- Charlie and I have been on a few cruises before KD. You
definitely need water legs at time....I don't believe Charlie could handle
a cruise ship now...
terryw -- Volunteers are great!
susannew -- The registration fees that are being paid by attendees is just
enough to cover the food, meeting room, researcher/doctors hotel cost for
one night, etc.
daveg -- If there is enough time for an anwer has anyone had much to do
with a CPAP machine? I use one to help me sleep but I am worried it might
be too much for my diaphragm in the long term
terryw -- I wish LenJ was hear to speak on that he has one
susannew -- We could do a chat about CPAP and BIPAP machines. We do know
some with KD use them and its helpful with sleep apnea for them.
susannew -- Len Janicki is who Terry is talking about. He lives in Las
Vegas now... used to be in New York.
chuck -- I will try to contact Kim this week. This can be a most difficult
task at times...Will let you know if I succeed.
susannew -- Perhaps a doctor familiar with them and KD is out there who
could come speak to us... again, asking... anyone know anyone?
terryw -- Dave he is on the contact list on the web site you can write him.
susannew -- Anna lea: Great!
bruce -- Ten minutes left....
daveg -- thanks Terry
johni -- I've got to go now. Thanks for an interesting and enjoyable first
time in the chat room.
susannew -- Thanks for joining in Johni... Have a great day!
terryw -- Dave look for Len's personal story page. It also has his e-mail
chuck -- Must leave now - enjoyed. Looking forward to Oct.
terryw -- bye Johni
susannew -- Bye. Take care Chuck and Anna Lea. See you in October.
bruce -- Thanks Chuck
chuck -- {goodbye chuck}
bruce -- Thanks John
terryw -- Thanks again Bruce for your time hosting the chat
susannew -- Yes, good to have another host for chats!
terryw -- I am going to sign off now.
bruce -- My pleasure. It was great hearing from everyone. You are all
great CHATTERS.
susannew -- Terry: Early? To go make me breakfast? Yahoo!!!
terryw -- bye all
bruce -- Bye Terry
ms-ronni -- {goodbye ms-ronni}
terryw -- Susanne you must be joking
susannew -- : )
terryw -- bye
susannew -- It was a good try...
bruce -- Thanks to everyone for the potential topics for future chat
rooms. These will be helpful.
susannew -- Yes, almost time to go. About 5 minutes. Take care everyone
and thanks for coming.
bruce -- Remember that August 15 is the deadline for the early
registration discount.
bruce -- Thanks, Susanne
susannew -- Your hired Bruce! Although we don't pay much!
daveg -- Thanks Bruce, thanks everyone and goodnight from a cold night in
Perth, Western Australia.
bruce -- Anything is better than nothing!
bruce -- Thanks Dave for joining us
susannew -- After August 15th it goes from $125.00 to $150.00 per person.
Also, please remember to get your hotel reservation. After September 12th
the discounted rate is not available. BWI Airport Marriott... go to the
KDA Web site for all the details. www.kennedysdisease.org
bruce -- Dave, sometime you need to tell us your thoughts about Steve
Irwin?
susannew -- Have a great day from almost sunny California - need that
marine layer to burn off!
susannew -- Who is Steve Irwin?
bruce -- The Croc Hunter!
susannew -- Ah hA!!!
daveg -- I try not to think of him! lol
susannew -- Crazy!!!
bruce -- I am showing one minute to go. Thanks again, everyone. Have a
safe and healthy day.

End Chat