Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Our Focus Remains on Research, Education and Support"

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.

2003 - November 15, KDA Conference

Kennedy's Disease Chat Transcript 11-15-2003

Topic: Conference Thoughts

Host: Susanne Waite

Chat Participants:

susannew
butch
bruce
bob-b
murf
johnm
paul-j
john-c
dbenson
don48312
gary
michigander

BEGIN CHAT

susannew -- Good morning Butch
susannew -- How was your trip back home?
butch -- Hi Susanne, Hope you have recovered from the convention. The trip
home was great.
susannew -- Almost. I think I've caught another bug from the flight - I
always get sick after flying. Terry is sick now too.
butch -- How did Terry weather the trip Home?
susannew -- Terry was fine on the flight. Just bored I think!
susannew -- Did you and Maryann enjoy the conference? Too bad Annette and
Anita weren't there - I miss them!
butch -- Mary Lou and I really enjoyed the conference. Research sure gives
all some hope for a cure.
susannew -- Definitely. I believe there will be a treatment in the next 5
years. A cure I think even in our lifetimes.
butch -- I really enjoyed renewing last years aquaintances and making new
friends this year.
bruce -- {welcome bruce}
susannew -- Its amazing to hear from some attendees that they didn't want
to come, didn't know what to expect, but came anyways... and were so glad
they did! I'm so glad we're able to make a difference in others lives and
help change their outlook. Knowledge is power and the more we know the
more we can plan, understand, accept...
bruce -- Good Morning, World
susannew -- Good morning Bruce. I'm sorry you and Cindy couldn't make the
conference.
susannew -- Hey Bruce, I bought a beginner's book to Tai Chi.. I know its
not Qi Gong, but its a step in the right direction if we just do some of
the exercises in the book.
susannew -- Trying to get Terry to do them with me.
bruce -- Great! Tai Chi actually is a modified form of Qiqong. It is
called 'moving Qigong' and incorporates all of the basic forms and just
puts them to a continuous movement exercise. I practiced Tai Chi until I
couldn't perform the foot work (balance issue).
bruce -- Susanne, there are some free or very low cost Tai Chi videos
(your library might even have them) that really help teach the correct
movements.
susannew -- Bruce: Good Idea.
bruce -- Reports from John and Murry were very positive. Especailly the
research being down in Japan.
butch -- Hey Bruce--sure missed you and Cindy at the conference. NOLA was
a great place to meet.
bob-b -- {welcome bob-b}
susannew -- We were very fortunate to have a volunteer to transcribe the
doctors/researchers audio tape this year (since we didn't video tape). We
will post this information on the KDA Web site as soon as that is
complete. Its a big job - even though it only took 3 or 4 hours of
recording the meeting, that translates into double or triple the time to
transcribe, proofread and have approved by the doctors/researchers for
posting.
susannew -- Good morning Bob.
bruce -- Ron, the conference sounds like it was a winner. Just had too
many conflicts this year.
susannew -- Bruce: Yes, I'm going to go over a little bit of what we heard
from the researchers at the conference. Dr. Sobue in Japan is moving
forward with human clinical trials - he is just starting the patient
selection process (individuals with KD in Japan).
butch -- Good morning bobb. Where are you from?
bob-b -- Good morning all. I am new to this group so I'm just trying to
read a little and learn more about the group.
susannew -- Bob: Do you have KD?
bruce -- Welcome Bob-b. I hope you can put up with us. We sometimes get a
little wild.
bob-b -- Yes. I'm 47, have KD and was diagnosed by Dr. Fishbeck back in
about 1983.
bruce -- Bob-b, where do you live?
bob-b -- I live in Raleigh, NC.
murf -- {welcome murf}
susannew -- Good morning Murray.
murf -- good morning
bruce -- Murray, my man, it sounds like you had a tough week.
butch -- Hi Murf, How was your trip home? We had a great time. Thanks to
you and Karol, Will and Louise, John and Terry , Susanne, and all who were
there.
murf -- Hi butch - Karol slept all the way home
butch -- We changed course going home, I was a little longer but the
mountains of VA and WVA were beautiful.Really a beautiful trip.
murf -- It was just great seeing all of you again. We had a great time.
murf -- Hi bruce - I need a holiday
bruce -- Less than two weeks and you get one.
susannew -- Today we are going to chat about the conference. Thoughts...
Ideas... Comments...
johnm -- {welcome johnm}
bruce -- Hey, John, how are you doing in Sunny Florida?
susannew -- We were fortunate to have the conference kicked off by Dr.
Kevin Stephens, Director of Health, City of New Orleans. Welcoming us to
the City of New Orleans.
paul-j -- {welcome paul-j}
bruce -- Welcome, Paul
susannew -- Then I went over a KDA update: Welcome & KDA Update, Susanne
M. Waite, President and Executive Director, Kennedy's Disease Association -
Did you find this information valuable?
murf -- I think it was great stuff Susanne
butch -- Hi Paul-j. Where are you from? Do you have KD?
paul-j -- I do not, but is throughout my family Thank you
paul-j -- Hi I am a chat room rookie, unlike my children... Is this thing
working?
paul-j -- Butch to answer you question, I live in Wis. but have affected
family members across the country
bruce -- Paul, I was born and raised in MN (Go Vikings), but I now live in
Georiga.
butch -- Paul--Sorry to hear KD is in the family but, this is the place to
get answers.
johnm -- Paul-j, where in Wis. I was born and raised in Fond du Lac.
paul-j -- john-c: welcome cheesehead Hello from Janesville
johnm -- Paul-j, I'm in Florida now. Couldn't put up with the Illinois
COLD winters.
paul-j -- Johnm: Where in FLA?
johnm -- Paul-j, We haven't lived in Wis for over 45 years now. Now in Sun
City Center FL.
john-c. -- {welcome john-c.}
butch -- Bob-b Do you have KD?
murf -- good morning John-c
butch -- Hi John c. Hope your trip home was great. Did you get your ticket
stubs
john-c. -- Thanks Butch, 10-4
susannew -- Then the topic of Social Security Disability, Dinah Laurich,
Area Work Incentive Coordinator, Social Security Administration - What did
you think of her presentation? Did you find any new information that you
didn't know before?
susannew -- Bruce has written an informative article about Social Security
Disability and we will be posting to our site shortly. SOrry, Bruce,
between the meeting and now getting sick we have fallen behind!
bruce -- No problem - I sent out a copy to a KD'r the other day when he
advised he was starting the application process.
paul-j -- Susanne, I thought you did a great job putting it together and
it was very helpful, esp. to a family member without KD
susannew -- Aha, Paul J. I've got your number! Thanks. I appreciate your
volunteering to help write press releases - I really would like your help
writing some regarding the conference, the grant award to J. Paul Taylor,
etc.
paul-j -- Susanne: just tell me what you need
susannew -- Paul: I'll email you after the chat! I'd like to get a press
release out about the conference in general, but a separate one about the
grant award to major news publications in the USA.
john-c. -- Hi all: Just catching up by reading this. I only am here for 15
minutes as there are lots of chores today.
dbenson -- {welcome dbenson}
susannew -- Hi Duane and Lori, We so missed you at the conference this
year!
dbenson -- We missed you guys too. How did it go?
susannew -- It went very well. I'm just going to go through the various
speakers and topics and then we'll get to the grand finale! The
doctors/researchers information...
bruce -- Welcome dbenson
murf -- Susanne - how are you feeling? Still sick?
susannew -- Murf: Yes, but I think I've caught something else from the
flight. Terry is also sick now...
bob-b -- To Susannew and others. I was not able to attend the KD
conference, but am very interested in hearing more about the research
results presented. Can anyone give us a short update?
butch -- Lori, I e-mailed you several times. Most times your e-mail
address does not accept mail.
susannew -- Yes, Lori, I've had that happen too... do you have a new email
address?
dbenson -- Butch: I am not sure why you are not getting through but here
is my e-mail again: This e-mail address is being protected from spambots. You need JavaScript enabled to view it '; document.write( '' ); document.write( addy_text42405 ); document.write( '<\/a>' ); //--> This e-mail address is being protected from spambots. You need JavaScript enabled to view it
dbenson -- I will go through and see if anything has been blocked recently
and unblock it.
susannew -- Lori: Have you been getting the KDA emails/announcements?
dbenson -- No, I have not.
susannew -- Lori: I'll send you a test right now... email if you don't get
it!
dbenson -- Butch: Can you send me your e-mail address.
butch -- Lori, We still have the same e-mail address which is
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
susannew -- Any thoughts on the speaker/topic of Social Security
Disability, Dinah Laurich, Area Work Incentive Coordinator, Social
Security Administration - What did you think of her presentation? Did you
find any new information that you didn't know before?
murf -- I have Danah's presentation
butch -- Susanne, SS speaker Dinah was dynamic. If there is any questions
she assured us SHE will take care of them and get answers.
susannew -- We have Dinah's presentation on Powerpoint and can post to the
site. Moving on...
susannew -- Yes, she said she'll help Terry get back Medicare premiums
that were deducted after we told them we did not want/need the coverage
and that he has coverage through my work. They got about $300.00 before
they finally stopped!!!
john-c. -- Dinah (SSA) has told us that she is available to assist anyone
with ??s or a problem.
don48312 -- {welcome don48312}
susannew -- Good morning Don.
murf -- morning Don
johnm -- Morning Don.
john-c. -- Conference pace great this year with longer breaks that gave
the folks much more inter-reaction and conversation time.
susannew -- I heard a lot of people say they'd never heard of a
Physiatrist. What did you think of Making Your Life Physically Easier,
Randolph L. Roig, M.D., American Board of Physical Medicine and
Rehabilitation Certified Physiatrist? I know a lot of people said they
were going to look into finding one back home and seeing what they can do
for them.
john-c. -- Until you, Susanne, were on that jury and heard from the expert
witness (Physiatrist), none of us had heard about that speciality.
susannew -- A Physiatrist looks at your particular physical challenges and
suggests ways that aids can help you. But not just fitting a square peg in
a round hole, they actually try to alter or develop aids that fit you
appropriately and are designed to make your challenge easier. Like a
custom wheelchair or bed or cane with a grabbing device or....
murf -- I didn't even know how to spell it thats for sure.
susannew -- Me neither - a Physiatrist was called as an expert witness in
a trial I was on the jury for.
susannew -- John, Murray, Butch: Did you find his presentation
informative?
murf -- Ya I thought it was very helpfull, I'll be trying to find one
here.
john-c. -- For those of you unable to make it to the conf., you should
look up physiatrist at www.google.com and read about them from the
Academy. There might be some real help for you from one of them.
don48312 -- morning all from FL. just catching up in the chat
bruce -- Hey, Don
susannew -- I found out in the women's meeting about another physical aid
for those with KD that one of our attendees has, called a palate lift. It
is a device that is put in the mouth to help the slurring speech and make
you more understandable. A special dentist needs to make this... I think
they had a medical dental university make theirs...
paul-j -- Susanne and all: It seems to me one of the most valuable
features of the conf was networking with the scientists; "getting in their
face" so to speak and letting them see there are many people out there
interested and depending on their work. This turns KD from just another
medical book entry to a human condition with a face, and it must have an
impact on them and their work. Dont forget that their attention is
constantly split among several other dieases
murf -- well said Paul
john-c. -- Most informative: He is dealing with symptoms & problems we all
face.
susannew -- Absolutely Paul, that is a major benefit to the conference.
The doctors/researchers like to see those with KD... it inspires them to
continue working and researching KD. In reverse, we gain much hope and
confidence that their will be a cure or treatment. I thank those
researchers/doctors from the bottom of my heart, because there are more
financially rewarding/lucrative diseases to research.
john-c. -- Paul, the conversations were as important as the presentations.
susannew -- Thoughts on Murrays presentation: Personal Transportation:
Options/Funding/Reimbursements/Tax Breaks, J. Murray Williams, Secretary
Kennedy's Disease Assocation
john-c. -- Murray who?
murf -- never heard of the guy
gary -- {welcome gary}
murf -- Gary - how was your trip home?
susannew -- The EMT's also did a great job. They really did their homework
reviewing the KDA site and understanding the disease, its symptoms,
complications, etc.. They even brought up the emergency medical card. If
you don't have one in your wallet, you very well might want to print it,
fill it out and get it in there. In an emergency, its important the
medical staff working on you understands you have KD and what could happen
in the event they must give you anathesia( sp?) etc...
susannew -- The link to get the medical card is:
www.kennedysdisease.org/res_card.html
john-c. -- The EMT knew more about our website than most of us.
murf -- I'd like to keep working on the spead sheet
john-c. -- Murf gave us a well thought out overview of options available
as well as tax breaks we can benefit from.
susannew -- Murray: I'd like it if you put together an article of what
your speech was and we could post it to the site.
murf -- Susanne - I'll try and remember what I said LOL
susannew -- Did you have fun on the Paddleboat Dinner Cruise? I saw
pictures Terry took. I was disappointed I couldn't go! I know it was a
great time to get to know one another.
murf -- Susanne - we had a hoot.
john-c. -- LOL!!
butch -- I thought the paddle boat trip was too short. We had such a great
time, and it ended much too soon.
john-c. -- Chair lift problems on the boat took away from some time
together.
butch -- The personel aboard the boat sure took good care of us. We sure
gave them a challenge and they sure stepped up to the plate.
murf -- butch - they sure did and she was well rewarded for her efforts.
butch -- Gary, What is your hometown?
gary -- Overland Park, KS It is closs to Kansas City.
murf -- Gary - wrong Gary, sorry I thought you were the Gary from Canada
susannew -- How did the Men's Group Discussion, Nothing Held Back - What
its Really Like Living with KD Facilitator: John A. Coakley, Sr. Vice
President, Kennedy's Disease Association go? I heard the men really opened
up this year and didn't hold anything back.
murf -- Susanne - we were only holding one small thing back LOL
john-c. -- Men's group: Everyone participated in an open-ended forum where
we really got down to personal issues affecting us all; differently from
one to the next.
butch -- I think more of the doctors should have been in the men's
discussion group. I'm sure they would have learned some useful
information.
murf -- butch - we may want to think about that for next time. Good point!
paul-j -- good point Butch Dr. Nick said he learned alot
john-c. -- Great point, Butch.
butch -- I know the doctors had their discussion group and we had ours. I
think we need to get together to talk as a total gourp. Exchange of info
is important!!!!
paul-j -- There was discussion about annual vs bi-annual conferences...has
a decision been made?
susannew -- Paul-j: No decision made yet, the board has not had a meeting
again. It will most likely be discussed and decided in December. We'd love
to have the meeting annually, but if we did, we would need to have a
committee of volunteers take it on. Its too difficult to have our board do
it all as it takes us away from other KDA business and the KDA is not able
to grow and do new things as our attention is focused on the the
conference. Also, the cost is a question. The KDA does subsidize the
meeting by about $4,000 in order to have it. The costs of the food,
banquet, and doctors/researchers hotel rooms add up even after
registrations are paid. But we think having the meeting is extremely
worthwhile! Next year the SFN is in San Diego. It would be great to have
one on the West Coast as we've now done the East (Baltimore) and Central
(New Orleans). It also depends on interest level. We must have enough
people that want to come in order to be able to afford to have the
conference. I've heard its difficult for some to afford to come to the
conference, especially year after year. (Even Terry and I could not afford
to keep coming every year by the time you put in airfare, hotel, food.) An
option we were thinking is perhaps just having an informal "holiday"
together... a cruise? A trip to Vegas I've heard many say they'd like. Or
Orlando? Who knows... Don't know what the interest level of that would be.
susannew -- The Women's Group Discussion, Nothing Held Back - What its
Really Like Living with KD, Facilitator: Susanne M. Waite President and
Executive Director, Kennedy's Disease Association went well. We talked
about challenges we face, adjusting expectations since things can't be the
way we thought they would be forever, possible solutions, family, and
other things. We once again could probably have used more time. I was
grateful to have others who are so strong and have been through the same
thing as I am going through share their feelings, solutions, etc.
john-c. -- Chores are calling: hate to run (LOL) but you know how it is.
john-c. -- Bye all. See you next chat.
john-c. -- {goodbye john-c.}
murf -- Bye John
butch -- So long John. See you soon.
susannew -- Any thoughts on "Keeping Busy - Staying Involved" Reducing
Stress and Depression Dr. Persephanie Silverthorn Psychologist University
of New Orleans' topic presentation?
murf -- Susanne - I'm just glad she came.
murf -- Paul - what did you think of her talk?
paul-j -- Murf: Sorry I missed the talk by Dr Silverthorn if that is the
one you meant
susannew -- I'm going to move along, just jump in whenever you'd like - I
want us to get to the researchers/doctors... but real quick... I found
"I'm the Government, I'm Here to Help" FDA - Rare Disease Update by Dr.
Debra Lewis, Director of Grants, Orphan Products Development, Federal Drug
Administration (FDA) very interesting. The FDA is able to now grant funds
for clinical trials when a drug compound is found that could be beneficial
for an "orphan" disease - such as KD. KD is considered an orphan disease
because it has a relatively small affected population and not a lot of
funds are directed its way for research, etc. This is good news. The
researchers applying for these grants can also be from outside the USA.
Which I though very interesting!
johnm -- How many attendees were able to bring their own scooters or
wheelchairs?
susannew -- Johnm: Are you talking about the meeting? or the Paddleboat? I
think anyone who wanted to bring there scooter/wheelchair could. We had
gotten a van that had a wheelchair lift (although it broke down, they got
them on the van.)
johnm -- Susanne, I guess I'm talking about just having their own
available.
murf -- The Hotel also had some chairs if we needed them
susannew -- Johnm: The rooms were set up schoolroom style with very wide
aisles so anyone with a chair or scooter could get to the spot of their
choice in the room.
johnm -- I take it then that everyone didn't bring their own scooter or
wheelchair.
susannew -- Johnm: From what I could see, I think most individuals did
bring their chair or scooter or cane.
susannew -- The dinner and silent auction are always a great highlight of
the meeting. Not only do we get to know one another, but the
doctors/researchers that attend are wonderful to break up from the other
doctors/researchers they want to talk with and sit at various tables to
talk with attendees one-on-one. I hope you took advantage and asked lots
of questions!
dbenson -- That's the part I missed the most was the dinner and silent
auction. I always have fun there.
susannew -- It was Lori - John Coakley and his humor had us rolling in the
aisles. And... the story about how Ron and Marylou met... well, Ron will
have to tell you sometime! Hilarious!
murf -- LOL that was great!
susannew -- Friday morning we had the doctors/researchers panel
discussion. This is always the main attraction for the meeting. Its always
hopeful to hear first hand what is going on the doctors/researchers labs.
Much of what we learned isn't available on the Internet or in any
publication as they don't publish their findings until they are complete
with their research. We get to have an inside look at what they are doing
through their coming to the conference and sharing.
susannew -- We also awarded J. Paul Taylor with his grant on Friday
morning. This was a great stride forward for the KDA and we want to thank
all of you who have supported us and helped us to make that happen!
michigander -- {welcome michigander}
bruce -- Welcome Utah
murf -- Unfortunately I did not get a copy fo Dr. Sobue's presentation
susannew -- The Doctors' and Researchers' Panel KDA Scientific Review
Board: Kenneth H. Fischbeck, M.D. Chief, Neurogenetics Branch National
Institutes of Health/NINDS (Bethesda, MD, United States) Albert R. La
Spada, M.D., Ph.D. University of Washington (Seattle, WA, United States)
Diane Merry, Ph.D. Thomas Jefferson University (Philadelphia, PA, United
States) Guest Doctors and Researchers: Hiroaki Adachi, Ph.D. University of
Nagoya (Nagoya, Japan) Lisa Ellerby, Ph.D. Buck Institute of Aging
(Novato, CA, United States) Jean-Marc Gallo, Ph.D. Kings College London
(London, England) Nick Di Prospero, M.D., Ph.D. National Institutes of
Health/NINDS (Bethesda, MD, United States) Bernhard Landwehrmeyer, Ph.D.
University of Ulm (Ulm, Germany) Andrew Lieberman, Ph.D. University of
Michigan (Ann Arbor, MI, United States) Angelo Poletti, Ph.D. University
of Milano (Milan, Italy) Gen Sobue, M.D. University of Nagoya (Nagoya,
Japan) Anne Sperfeld, M.D. University of Ulm (Ulm, Germany) Charlotte
Sumner, M.D. National Institutes of Health/NINDS (Bethesda, MD, United
States) J. Paul Taylor, M.D., Ph.D. University of Pennsylvania
(Philadelphia, PA, United States) Patrick Weydt, M.D. University of
Washington (Seattle, WA, United States) Grad Students: Erica
Chevelier-Larson P.J. Thomas Thomas Jefferson University University of
Washington (Philadelphia, PA, United States) (Seattle, WA, United States)
susannew -- What did you think of the doctors/researchers discussion?
murf -- I finally understand what I have in common with a fly! LOL
butch -- Wasn't it great that Dr. LaSpada came to ther convention to spend
his anniversary with us. He is a very dedicated doctor. Hope his wife
understands.
susannew -- It was especially wonderful to have Dr. La Spada with us as he
is very knowledgeable about Kennedy's Disease. I hope he brought his wife
along to enjoy New Orleans on their anniversary! Happy Anniversary to you
two!
susannew -- All the doctors/researchers went one-by-one and talked about
what they were doing in their labs. I'm not sure if I can recall all in
exact detail, but I'll do my best... Please help me if you remember. I'll
start with Dr. Sobue as he is moving into human clinical trials shortly
with the drug Leuprolin (I hope I'm not getting this mixed up - would
someone confirm it was Leuprolin? )(Sp?). It is a testosterone blocker.
What he's found is that in mice (male or female) that testosterone
actually aggrevates KD and makes it worse/progress faster. He has
experimented in mice and found that if you remove the testosterone
(castration), the disease actually improves. You may lose other functions
you don't want to, but muscles seem to be larger and neurons may even
regenerate. The drug he will be testing acts like a "chemical castration".
The challenges they face is detemining how long to run their trial before
they should expect results, what markers they will use to determine
improvement, etc.
michigander -- just a quick note...screen at beginning of this chat saying
"no chat existed"...lucked out and got in as visitor but 15 minutes before
end got out to come in as a non-visitor and it took a while before it
stopped saying "no chat" again
susannew -- Michigander: Thanks for letting us know - we don't program the
MDA chat as it is the MDA's program. But we can let them know.
paul-j -- Mich: FYI the chat text did not come up for me until I sent a
message
susannew -- Dr. Albert La Spada (University of Washington) has created a
new transgenetic mouse that can be utilized in the study of KD. He and Dr.
Lisa Ellerby from the Buck Institute of Aging have been colloborating.
dbenson -- Got to go. Great to hear from you all. Will talk to you soon.
gary -- {welcome gary}
dbenson -- {goodbye dbenson}
susannew -- Michigander: Do you have KD?
michigander -- Symptoms started just a little over 10 years ago, yes I do.
susannew -- Michigander: Have you "joined" the KDA?
michigander -- I missed some of the conversation but I'm pretty sure I
just recently joined KDA (although not too computer literate)
susannew -- Dr. Diane Merry and Erica Chevelier-Larson (grad
student)(Thomas Jefferson University)continues to work with the mouse
models her lab has created and is studying varous avenues of KD... Dr.
Lieberman (University of Michigan) is working to develop a new knock-in
mouse model and also holds KD tissues in their brain bank on behalf of the
KDA.
murf -- We had dinner with Dr. Merry, she's doing great stuff!
don48312 -- {welcome don48312}
bruce -- 13 minutes left for the Chat
susannew -- I belive it is Dr. Jean-Marc Gallo (Kings College London) or
Dr. Bernhard Landwehrmeyer (University of Ulm) is studying the axon
transmitters and how they get "clogged" and cannot communicate
effectively.
butch -- Hey Don. We have to get one of these conventions to take place in
Las Vegas. Use your pull.
don48312 -- LV would b great
susannew -- Dr. Charlotte Sumner, Dr. Kenneth Fischbeck and Dr. William
Kennedy are doing some research together.
susannew -- Ron: Would you explain this... I can't recall exactly - but I
believe they are looking at the nerves in skin and looking for a way to
utilize a marker for research that can show improvement in a human
clinical drug trial?
johnm -- Got to be going. Talk to you all next time.
johnm -- {goodbye johnm}
michigander -- It would be great if someone could put together a history
book timeline of what doctors are doing what, when and where?? LV or SD
sounds great to me... what is SFN?
susannew -- SFN: Society for Neuroscience - we piggyback our Conference
off another large conference such as this in order to have the
doctors/researchers join us. SInce they are already going to be there for
that meeting, we ask them to extend their trip one more day to join us, we
pay for their hotel stay. If we had to pay for their airfares, we could
never afford it as we are too small. It could be $30,000 just to fly them
all in. So we are fortunate that this "piggybacking" arrangement works
out!
don48312 -- cya thursday johnm
susannew -- J. Paul Taylor, NIH/NINDS soon to be University of
Pennsylvania has been doing a lot of work with Fruit Flies. The eyes of
fruit flies have a multitude of neurons/nerves that can be studied and a
drug compound can be screened utilizing the fruit flies. They can give a
quick indication if something looks promising.
butch -- Susanne--I think you are right. The nerves in the skin give the
history of what is ocurring in the organs and other parts of the body.
paul-j -- Susanne: Certainly you mentioned big problems re an annual
meeting How about an 'off year' shortened 1 day conference, just for the
purpose of getting the scientists together on an annual basis?
murf -- My vote would be for a 2-3 day conference to make the travel worth
while.
susannew -- Paul J: We could do this if we piggybacked off another
scientific conference they were all attending. However, not all the
researchers go to all the same scientific conferences... But SFN seems to
be one that the majority do share. We missed having Dr. Lenore Beitel and
Dr. Mark Trifero from Lady Davis University, Dr. Mark Diamond University
of San Francisco and Dr. Jeffery Zajac and Dr. Karen Greenland from
Univerity of Melbourne this year.
murf -- Provided we get some help planning.
bruce -- Five minutes left in the chat...
susannew -- WIth the KDA Conference, the doctors/researchers did have a
private discussion Friday afternoon from 1:30-5:00 p.m.
don48312 -- appreciate the update susanne
bruce -- Susanne, thank you for leading us 'non-attendees' through the
conference. It was very helpful. I hope Terry and you feel better soon.
murf -- How can we find out how that went?
susannew -- Well, that's all for now. We'll be transcribing the various
researchers/doctors presentations thanks to a very wonderful volunteer who
is going to take that challenge on. Also the questionnaire results are
almost done thanks to other volunteers!
murf -- Thanks to you!
paul-j -- job well done
bruce -- I've got to go. Thanks to everyone for attending. Stay healthy
and happy.
susannew -- We plan to write to Dr. Merry and La Spada and ask them!
bruce -- {goodbye bruce}
butch -- It would be more economical to extend the conference one more
day. Getting there is most of the cost. Gaining more information in the
one more day we would spend, is a very economical way to gain info.
susannew -- Thanks so much for coming to the chat! Until next time! Have a
great weekend!
murf -- bye all
don48312 -- bye all
murf -- {goodbye murf}
don48312 -- {goodbye don48312}
susannew -- Butch: What other information would you like to see?
bob-b -- bye all!
butch -- So long Bruce Susanne and all. Stay healthy. Bye.
butch -- {goodbye butch}
bob-b -- {goodbye bob-b}
susannew -- Sorry so much of this was like a report - but wanted to get
all the information in! Bye!
paul-j -- bye all
paul-j -- {goodbye paul-j}
michigander -- So glad to have found this chat room and fellow KD's...need
to work on how to freeze a page as my daughter's printer doesn't work...
hope to drop in in a couple weeks...tks again
susannew -- If you haven't visited.. please go to www.kennedysdisease.org

END CHAT