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Kennedy's Disease Chat Transcript
12-15-01
Topics: Special Guest - Dr. Albert LaSpada

Chat Participants:

  • susannew (Typing for Dr.  LaSpada due to technical difficulties)
  • vern
  • patrick
  • kath
  • jean
  • lenj
  • don48312
  • bruce
  • mikeg
  • speedy
  • butch
  • billeric

Special Note: Dr LaSpada attempted to join the chat himself but experienced difficulties getting his type to show up in the room so part way into the chat session Susannew contacted him via phone and  relayed chat messages for him.


susannew -- {welcome susannew}

vern -- {welcome vern}

susannew -- Hello Vern

susannew -- Glad you could join us this morning, we've missed you!

vern -- Good Morning Susanne

vern -- It's been a very long and trying summer and fall with the passing of my beloved Peggy. But I will not give in and "Keep Reaching for the Stars"

susannew -- I know you will Vern. We've prayed for you and your family.

bruce -- {welcome bruce}

susannew -- Good morning Bruce.

vern -- Hello Bruce

bruce -- Good morning

patrick -- {welcome patrick}

susannew -- Hey Patrick, long time no talk! Just kidding!

dr-laspada -- {welcome dr-laspada}

susannew -- Good Morning Dr. La Spada, Thank you so much for joining us this morning.

susannew -- Dr. La Spada (University of Washington) is joining us this morning from Seattle.

bruce -- Doctor, I heard yesterday was beautiful out there - a change from the recent rains. What is it like today?

susannew -- Dr. La Spada, would you type a message for a test.

patrick -- Everything is OK now. Dr. LaSpada, is that how you wish us to address you, or do you have a nickname you prefer?

susannew -- Dr. La Spada, if you are there, please type a note and then hit the "send/refresh" button using your mouse. Thanks.

bruce -- We are getting a little colder here in Pennsylvania. I can really feel it in my muscles and bones. Good Morning Patrick

patrick -- Hello everyone.

vern -- Morning' Patrick G

susannew -- We are waiting for others to join us... the chat officially starts at 8:30 a.m. (pst) this morning.

patrick -- {welcome patrick}

jean -- {welcome jean}

susannew -- Good morning Jean.

patrick -- That was weird. I signed in, got a flash of another screen with Dr. La Spada (Hi!) and then it went to a screen without him.

jean -- Good evening everyone

don48312 -- {welcome don48312}

susannew -- Good morning Don.

patrick -- {welcome patrick}

bruce -- Welcome Don

vern -- Hi Don

susannew -- {goodbye susannew}

mikeg -- {welcome mikeg}

susannew -- {welcome susannew}

bruce -- Welcome Mike

mikeg -- Hello from Atlanta

don48312 -- gm all from sunny FL

susannew -- Good morning Mike.

jean -- To the team of KDA - Fine that you arrange once more a chat with an important personality

billeric -- {welcome billeric}

patrick -- Jean, how is the weather in Belgium this time of year?

jean -- Hi Patrick - Very cold for the season. Last nights -10 degrees, during the days - 5 degrees

mikeg -- Once again I've got to cut it short today. I have an adult support group party to go to. For the last 3 weeks we've been going to some kind of MDA party.

patrick -- Mike, say Hi to Jerry Lewis for me!

mikeg -- Sure...

billeric -- Good Morning from frosty Phoenix

dr-laspada -- {welcome dr-laspada}

bruce -- Good Morning

patrick -- I am still having a problem with the screen refresh - it works OK for awhile, then in reverts to an earlier time and leaves out recent posts. It's never done this before. Is anyone else having a similar problem?

susannew -- I have no problems for my side.

bruce -- No, Patrick, everything works fine here.

don48312 -- ive made my last negative comment about this chat site

billeric -- Same here, working fine

jean -- PATRICK - Last chat I had the similar problems, the screen shows only the last comments

susannew -- Dr. La Spada may be having problems with the chat also...

susannew -- We know he is logged in...

vern -- Patrick, try shutting down your computer and re-booting. Sometimes this will resolve

patrick -- Vern, followed your advice before I saw it. It seems to be acting normally now.

vern -- Great!

jean -- Patrick - Wish a new web connection by Santa Claus.

vern -- Just returned from Hawaii---68 at night--78-80 during the day

patrick -- {welcome patrick}

bruce -- Hawaii - which island?

vern -- Bruce- The big island--Kailua-Kona for 4 weeks at my daughters


speedy -- {welcome speedy}

lenj -- {welcome lenj}

butch -- {welcome butch}

patrick -- {goodbye patrick}

mikeg -- Hi Len, how are you feeling?

lenj -- Hi Mike. I'm very close to where I was before surgery. Bruce I had spinal stenosis surgery to open spinal area.

bruce -- Hey Butch, welcome.

lenj -- Hello everyone. Sorry I haven't been in the chat lately. Neck surgery kept me in a hurting state--BETTER now.

bruce -- Lenj - sorry to hear about your injury. Was it a fall?

susannew -- Len, glad to hear your doing better! Jeanne wrote us about your healing fine.. you'll be back in Vegas in no time!

speedy -- Hi everyone I had A hard time getting in.

lenj -- Unfortunately 2 days after surgery both arms and hands became

paralyzed

bruce -- Lenj - wow. I am happy to hear things are getting better.

billeric -- Lenj, my wife had the same surgery 2 weeks ago. Surgery went fine but had some side complications

lenj -- billeric my surgery was successful, but the complications (swelling) were the problem

mikeg -- Glad you're feeling better, Len. I'm ready to go to Hawaii like

Bruce. I could stand some 80's right about now.

don48312 -- 80's here mike 4 last 3 weeks

mikeg -- That's what I hear. I need to get down there soon!

don48312 -- waiting 4 u & Paula mike. janick's also

vern -- There sure is a difference in how I feel in 80 degree weather as opposed the 34 degrees outside right now

don48312 -- where vern?

vern -- Santa Rosa, California Wine Country

lenj -- Don48312 Fell in love with SUNCXITY Vegas

don48312 -- len, did u do any good at tables?

susannew -- Dr. La Spada, please call us at 805-577-9591.

susannew -- Dr. La Spada, I've tried to call you direct, but your phone line is busy.

susannew -- Just spoke with Dr. La Spada... the system is not showing his messages... he's switching to a different computer... if that doesn't work, he's going to try using Terry's login and may be Terryw for today's session... if that doesn't work, then he said he'll call me and I can read the chat to him and transcribe back his answers...

butch -- GOOD MORNING--I just finished work just in time for today’s chat. Yesterday was the first time my legs collapsed from under me. It was a scary event for me this first time it happened. I was hoping the doctor could help with a little guidance. Will this happen again--will it happen often? I guess without a crystal ball no one knows.

lenj -- Butch I use a cane for those times. It helps me regain balance when that happens

susannew -- Butch: Terry's legs collapsed years ago and it was extremely scary. He couldn't move them for over 4 minutes... it doesn't happen often, but it has happened again.

speedy -- Be careful as you can Butch, I fall a lot broke a knee bruised knees chipped bone in elbow, just be aware that you will fall at no given time.

mikeg -- Butch, I think we've all had our share of falls. You just have to try to grab hold of something to stop the fall when you feel it happening.

don48312 -- I had my legs collapsed only once, thought I broke em

vern -- Butch, My legs have failed me several times--there is no set pattern. I'll fall a couple times a week, then not at all for a couple months.

butch -- Lenj--thanks for the response. I know we all have trouble from time to time. I just don't know if a cane would have helped. Bruce--thanks for the knowledge. I'll try to stay on my feet.

don48312 -- me2 butch

billeric -- I had left leg collapse just once. Hit the floor like a ton of bricks. Scared the heck out of me

mikeg -- I am really a believer in exercise to keep the strength up. Also in diet to keep the weight down!

lenj -- Mike my weight will keep anything down

bruce -- Butch, a cane only helps me with my balance. If I am going down - I go down ... hard.

butch -- Billeric--Unless you have it happen to you, it is hard to explain just how your legs just go to jelly.

speedy -- Patrick, my wife says I run all day like that rabbit on the ever ready battery

vern -- There is no warning

patrick -- Some falls I can feel coming on. My back is spasming or my legs feel shaky, or I am just tired. Usually I can get somewhere to lean against or sit down. If I have to, I can do a controlled fall. I always

use a walking stick to help my balance. Then sometimes my knee will buckle unexpectedly, and I'll fall without forewarning. That's when I get knee and elbow dings.

mikeg -- I usually don't have the weak legs syndrome unless I've been walking or exercising for a long time. Does anyone else get weak legs just after resting or sitting for a long time?

susannew -- mikeg: just asked Terry, no, not after resting/sitting.

bruce -- Mike, yes! I have to remind myself to get up every hour or so and take a short walk. Otherwise - real problems.

don48312 -- legs usually feel good after sit, especially if there raised

billeric -- mikeg, my legs get tired easily when walking. Ankle pain and feet pain also.

don48312 -- inactivity is culprit

mikeg -- That's the way I feel, Don.

butch -- The worse thing about falling if you are not severely injured is to your pride for not being able to get to your feet without help. This really bothered me to need someone to get me up.

billeric -- I agree Butch. Still try to hide I have a problem

jean -- mikeg- When I try to walk after sitting a long time my legs are +/- out of control

patrick -- I have to mix up sitting, standing, walking, and laying down. If I do any one for a long time, I get weakness, pain, and or cramps.

patrick -- {welcome patrick}

mikeg -- Len, what the temp up in Buffalo?

lenj -- Buffalo Thursday 58-- Today first snow on the ground--typical

susannew -- Sunny Southern California... in the 50's brrrr

patrick -- {welcome patrick}

kath -- {welcome kath}

dr-laspada -- {welcome dr-laspada}

susannew -- Dr. La Spada: Still having problems? Please try Terry's login then. If that doesn't work, call us again. Thanks.

susannew -- Dr. La Spada: Please type a test message in the "Type Message" box on the left side of the screen. Then hit the "Send/Refresh" button using your mouse (left mouse button).

patrick -- Speedy, I like your name. In my last few years in the Army, I started having a lot of trouble getting around. A good friend of mine gave me the nickname "Too Fast".

kath -- GOOD MORNING ALL

kath -- DOES ANY ONE IN THIS ROOM HAVE ANY OTHER DISEASES EXCEPT THE KENNEDYS

bruce -- Kath - Kennedy Disease is enough for me.

kath -- I MEANT WITH THE KENNEDYS DISEASE

billeric -- kath, high blood pressure and vascular stuff.

jean -- Kath - Kennedy's Disease

don48312 -- <--- high blood pressure, diabetes, kidney, carpal tunnel, etc......

kath -- MY HUSBAND HAS CROHNS DISEASE GOUT HERNIATED DISCS SCIATICA MIGRANIE HEAHACHES

lenj -- Kath Problems not necessarily diseases--sleep apnea, heart attack, spinal stenosis and disk problems in lower back

kath -- AND KENNEDYS DISEASE

don48312 -- yep

patrick -- {welcome patrick}

kath -- HAS ANY OF YOUR DOCTORS STATED THE OTHER ILLNESS'S ARE RELATED TO THE KENNEDYS

lenj -- Kath--the doctors just don't know

don48312 -- only diabetes kath

vern -- I think we all have many challenges to overcome. My theory is you must keep a positive attitude to survive this one.

mikeg -- Bruce, how old are you?

jean -- Had anyone try a new medication last time?

don48312 -- no jean


******SUSANNEW BEGINS PHONE TRANSCRIPTION FOR DR. LASPADA****


******DUE TO DR LASPADA NOT BEING ABLE TO TYPE IN THE ROOM****


susannew -- I am going to transcribe for Dr. La Spada now... he's just called me. I can take questions one at a time.

susannew -- Sorry he cannot get his messages to show up and we can't figure out why!

bruce -- Did anyone see the recent MD magazine article on osteoporosis (sp) - the need to stand or walk whenever possible to help generate new bone cells?


susannew -- Dr. La Spada: What do you think of stem cell research in view of KD?

susannew -- MY view is that stem cell research is one of the most promising avenues of research. But, this type of research is in its infancy and there are many technical problems...

susannew -- ... that need to be overcome, before it would be applicable and used on people.

patrick -- {welcome patrick}

kath -- does any one have muscle cramps/spasms throughout the body

don48312 -- no kath

lenj -- Kath yes especially neck, legs, arms

jean -- Kath - on day much, an other day not at all

butch -- susannew--Please ask the good Doctor about the pros and cons of exercise.

susannew -- Butch: Pro/cons of exercise. Exercise in moderation is a good idea. But there is no evidence that suggests if you work out excessively that that would make a difference or if you don't work out in all that that would do you in. Stay as flexible and fit and good muscle tone as possible is important.. Advocate a moderate exercise routine, but don't push yourself to do anything dangerous... don't force yourself to walk

long distances if you can't.

kath -- my husbands doctor thinks he has another disease along w/the Kennedy’s because of the spasms/cramps has any one else been told this?

bruce -- Kath - spasms are a part of KD.

kath -- Per DR, Kd Is Not A Painful Disease ,

don48312 -- <--- no pain

kath -- yep

bruce -- Kath - the side effects can be painful including severe muscle cramps in the early part of the disease.

jean -- Kath - Some has not pain at all, other have much pain

susannew -- resting is the best thing you can do... it depends on the type of problem, but it is fine to take anti-inflammatory or massage therapy... there's nothing different to do than if you didn't have

Kennedy's ... if you have tightened muscles from over activity. nothing different treatment cause you have KD>

vern -- Kath, I tend to disagree---some of us are really suffering real pain. aching, burning in legs, sometimes up to the groin area.

susannew -- Our experience is that one of the earliest sign of KD is muscle cramps, which are painful and a lot of people have problems with painful cramping and others don't and we don't really know why some get

pain and some don't. But painful muscle cramps is a common complaint.

speedy -- Dr. Jeffery Rosenfeld has told me that over excursive would tear the mussel and they would not build back.

bruce -- Vern - aches and pains (I use to associate with getting old) are a part of my life - especially when it is cold.

kath -- this is what we are being told

lenj -- Kath pain come from doing things different to compensate. Walking carefully so you don't fall might cause muscle pain in back or legs. the said effects could be painful

don48312 -- Susanne, what is DR’s specialty again?

bruce -- Susannew - if you have stretched your muscles through over-activity and they are not responding back even after days - is there anything a person can do to help them recover, besides rest?

vern -- Sometimes I even get cramps in my fingers and they go everywhich

direction. Very painful.

mikeg -- Susanne, I see dr-laspada is logged in three times and patrick has four log-ons. Maybe if they close all of their sessions and try again...

patrick -- That's because I have to Reload to see recent messages. I've restarted computer, recycled modem, played with browser settings, etc. I never had this problem during any other chat.

susannew -- {goodbye susannew}

patrick -- {welcome patrick}

susannew -- {welcome susannew}

patrick -- {welcome patrick}

susannew -- Any other questions for Dr. La Spada:

don48312 -- sue, are any new developments in KD research?

susannew -- New developments in research: making progress in developing a mouse model that can perfectly replicate KD and that will be really important. Some experiments have been very promising. also making progress understanding why the polyglutamine tract is causing the disease.

susannew -- Everyone knows the reason why you have KD is too many polyglutamine in a chain/row... So now we think that the extra polyglutamine cause the mutant KD protein to mess up gene expression and

we believe that certain genes are turned off when they should be turned on. We think this involves histone acetylation... so this is a chemical modification that occurs in chromosomes that makes the gene be readable. Without histone acetalation this gene cannot be turned on.

susannew -- SO what this means is that we are now testing drugs on animals, other polyglutamine diseases (like Huntington's Disease, Spinocerebellar ataxias) to see if we can cure the disease. WE have drugs

that we are testing in animals, hoping to cure these disease and if we can then we may be able to use with KD.. .because these diseases are similar and share the same type of mutation.

patrick -- Dr. L - are expanded CAG repeats directly related to apoptosis? Could another gene besides the AR gene be involved?

kath -- Does anyone one here have chrones disease Or Gout Along With The Kd

kath -- or knows anyone With The diseases

vern -- Bruce how young are you? I'm pushing 69.

bruce -- Vern - 55

patrick -- {welcome patrick}

butch -- Dr. La Spada--What can we do as individuals and as a group to help bring about a cure for KD? You have some of the best test subjects right here. Use us.....

billeric -- Susannew, does the Dr. feel arch and ankle pain are common in

KD?

bruce -- Doctor - my MD doctor commented that KD is still a low priority for research since it strikes such a small number of people. Is this the general consensus of the medical research community (you and a few other are excluded, of course)?

susannew -- KD is a motor neuron disease and falls into a class of other diseases, such as ALS, and since so close to ALS is an appropriate disease for research funds and the Federal Government just set aside $3,000,000 to study motor neuron disease and KD is included in that group.

mikeg -- {goodbye mikeg}

kath -- Excuse me, My Fathers has Been Diagnosed with KD, That Is The Reason I Am In This Chat room, Can Anyone Tell Me If They Have Any Other Serious Problems That Are Similar To KD?

patrick -- Kath, people with KD can, and often do, have other medical problems. Some problems are unrelated to KD, some are indirectly related, and some are more directly related. For example, if one is weak and cannot exercise, then a loss of flexibility can be a direct result. In addition, inability to exercise can promote cardiovascular degeneration and metabolic disorders.

butch -- Dr. La Spada--What about electric shock to deliver different messages to the muscle from the nerves?

susannew -- Electrical Shock treatment is not my area of expertise. The problem is that the nerves are degenerating and they cannot generate the messages that are needed, therefore its not a problem with the relays, the problem lies with the "substation" and not the relays. but there may be a way to get messages, someday, from the brain to the muscle bypassing ... but not qualified to judge how likely this is.

vern -- Dr. La Spada, Is there any known drugs available to reduce the pain in the legs other than nsaids?

susannew -- Note from Susanne: Terry takes Ultram... Dr. La Spada says, not aware of any drugs that are specific for KD pain, but you could take any drugs that are for pain relief in general could be used. Ask the

advice of your own personal doctor. There is no special pain killer just for KD>

bruce -- Doctor - before this ends I don't get a chance to say this, we (the KD community) really appreciate and value all your research and dedication to finding a cure for our future generations. You give us hope.

vern -- Here, here Bruce!!

don48312 -- thanks, DR la

patrick -- Muscles not only move bones, they support them. The lower leg, ankle, and foot are a complex of musculature which support the structure. If those muscles become weak, then more stress is placed upon bones, ligaments, etc. This leads to inflammation and pain. In addition, weakened muscles are inefficient pumps for venous blood and lymph. Thus, KD weakens muscles which then leads to other complications, all of which can cause increased sensations of pain.

patrick -- {welcome patrick}

jean -- Dr. La Spada - Has the Kugekberg-Welander disease an the Kennedy disease similar causes?

jean -- Sorry - KUGELBERG-WELANDER

susannew -- Jean: K-W is an autosomal recessive disease caused by the spinal muscular atrophy gene, its SMA III> Its the loss of function of a certain gene that causes KW, in KD its the polyglutamine stretch that

causes the disease. SO even though the net result is the same, loss of motor neuron, the genetic and molecular causes of these two diseases is very different.

susannew -- They look similar... SMA III (K-W) and SBMA (KD).. on the surface. You’ll never confuse KD with someone who has Huntington's on the surface but at a molecular level they share the same problem... too many glutamines...

bruce -- Doctor, my brother continues to be diagnosed with "familio ALS" (sp). He insists that it is not KD and has not had the blood test. Is this type of ALS similar to KD allowing patients to live a lot longer?

patrick -- Familial ALS comprises about 10% of ALS cases. All ALS, like KD, have a range of progression and symptom severity. To the best of my knowledge, there is no correlation between symptoms and whether ALS is familial or not. Finally, there are significant numbers of patients who have been diagnosed with ALS, with long term survival and slow progression, who may in fact have KD instead of ALS.

susannew -- Bruce: Its highly likely your brother has KD and does not have familia ALS, and if his physician was aware of your family history, he would most likely agree... however without examining your brother, we can't be certain.

butch -- Dr. La Spada--Thanks for coming on board for this chat. Have you ever been exposed to any of our other chats? Have you been given access to any of our chat transcripts?

susannew -- Yes, I am emailed all KDA updates as you are. I get more emails from the Waites, than anyone else!

patrick -- {welcome patrick}

susannew -- Bruce: Does anyone else in your family have KD?

bruce -- Yes, I have two brothers with KD. We had an uncle with very similar symptoms also.

patrick -- {welcome patrick}

kath -- Today My Dad Got Down On His Knee To Look Under The Bed For Something He Dropped, It Was a Struggle to get up, it Didn’t Take 10 minutes to Get Up, But To Watch a Once Strong As An Ox Man Have Trouble Getting up, Pains me, I’m Only 14, I Have 2 11 yr. old Sister , What worries me is, I understand he has KD, But if There is Something Else He Has That We Do Not Know About

patrick -- Kath, the only way to get that answer is for him to have a thorough physical exam.

lenj -- Kath I know how you feel, my 2 sons feel the same way. Keep in mind that the progression is slow and help your dad only when he asks. I'm sure he is nervous and self conscious

vern -- Kath, First of all, let me commend you for taking such an active part in the health of your father. Getting up off the floor with difficulty is just one of the things we have to put up with.

lenj -- Kath if you or your dad needs someone to talk to, I'm willing E-mail This email address is being protected from spambots. You need JavaScript enabled to view it.


lenj -- I know that meeting and talking to fellow KDAers has help me tremendously

bruce -- Kath, as Len and Vern commented, we are all here for you and yours. Our combined experiences might help your father or your family through this time.

patrick -- {welcome patrick}

susannew -- Any questions I've missed. 20 minutes left in chat.

susannew -- Dr. LS: What about FDA drug screen?

susannew -- We are trying to come up with a drug assay. Thousands of drugs have been made available for screening for researchers who work on neurological diseases.

susannew -- Right now we're in the process of deciding what would be the best assay to do a drug screen to identify a compound that would help someone with KD.

don48312 -- doc, any more on the choking some of us have? any treatment?

susannew -- Lifestyle modification; lower the risk of choking, by cutting the pieces small... avoid foods people would easily choke on. Ear, nose and throat specialists might have some suggestions, but unfortunately, I don't.

don48312 -- doc, not choking when eating, but the constriction of the throat when we have colds and flu

billeric -- Susanne, Thanks for having the Dr. on with us. It sure makes our chats a lot more valuable.

bruce -- Doctor - diabetes seems to be a frequent side effect of people with KD. Is it more common with KD or just part of the growing old process?

susannew -- Diabetes: initially some people thought there was more diabetes with people with KD. But once we had a chance to look at a large number of families, we concluded it is just a common disease in the

population, a lot of people with KD get it just like the general population... Not aware of any connection between KD and Diabetes... some suggestion that with Huntington's Disease there are metabolic changes...

but right we don't know for certain.

patrick -- Type II diabetes is listed as a symptom of KD. I have been taking medicines to lower my cholesterol, triglyserides, and blood sugar. It is unknown is diabetes is "caused" by KD, or if it simply occurs concurrently. In my case, I have two other risk factors - weight gain due to KD induced inactivity, and a father who had Type II diabetes.

butch -- Dr. La Spada--How do we get more Drs. to get into research. I think it takes a special kind of person to get into research. Thanks for searching for the cure to help me and my grandson who may have a 50% chance of getting this disease. Thanks.

susannew -- Right now in "my" lab we are doing an experiment to look at the role of programmed "cell-death" genes, and the results are still preliminary. But, they may very well may be playing a part in KD motor neuron pathology.

kath -- my 11 y/o daughter has been experiencing muscle cramps for 2 years is this because of the KD

kath -- IM sorry I am the wife my daughter has been talking as well

don48312 -- kath, has your husband talked to others with KD?

susannew -- Kath: I've never heard of children, even males, having problems, so it seems unlikely, but I couldn't say for certain, because I haven't had the chance to speak with her or examine her.

kath -- we do not know anyone that has KD

kath -- my husband was diagnosed with KD in may after 18 yrs

don48312 -- all of us have KD kath. I’m sure any of us would be glad to talk to your husband over the net or by phone

kath -- I really appreciate that I think my husband needs to talk to someone

kath -- IM really worried about my daughter since she is having muscle cramps and as far as I know is to young to experience any side effects of KD as far as being a carrier only

jean -- Dr. La Spada - Are there other diseases than Huntington who can be compare to KD?

susannew -- Bruce: Still nothing I know of you can do, very reasonable for those with KD to get flu shots and pneumonia shots to help you avoid getting a respiratory illness. Please try to avoid a respiratory illness. It can be more serious for someone with KD>

bruce -- Doctor - thank you for visiting our chat room today (on a Saturday, no less). Again, we appreciate everything you are doing to help us. Susan - thanks for transcribing for the Doctor. I have to sign off. A

safe, healthy and happy "Holidays" to everyone.

speedy -- I have to go now, everybody have a good day. See You.

bruce -- {goodbye bruce}

vern -- It's Aloha time. I've got a 10:00 appointment. Thanks again Dr. La Spada for your insight into what is taking place in the KD community.

don48312 -- <--- This email address is being protected from spambots. You need JavaScript enabled to view it.

lenj -- Goodbye everyone and Happy Holidays to all of you. Kath good luck and feel free to call or have your husband call.

billeric -- Kath, there are a bunch of us ready to talk.

jean -- Kath - This email address is being protected from spambots. You need JavaScript enabled to view it.

susannew -- Ten minutes till close of chat. Any last questions?

susannew -- Please visit the KDA site: www.kennedysdisease.org

lenj -- {goodbye lenj}

vern -- Kath - This email address is being protected from spambots. You need JavaScript enabled to view it.

speedy -- {goodbye speedy}

susannew -- WE couldn't have made the progress we've made without those who have KD and we appreciate the gratitude of those who have KD.

susannew -- I am amazed by how the KDA has come to be and grown and thrived and prospered and I remember being there a year and a half ago when it was discussed, as Susanne, Terry and Patrick's brainchild and I'm so impressed by how hard everyone has worked and what has been

accomplished in what is considered a very short time.

jean -- Dr. La Spada - Are their other diseases than Huntington, who can be compared to KD?

susannew -- That was an exact quote from Dr. La Spada, I did not embellish. Thank you very much Dr. La Spada for being here today.

don48312 -- doc, would like to have a beer with you when we celebrate the cure of this disease.

don48312 -- I’m buying, lol

susannew -- Dr. La Spada said having a beer when a cure is found would be great, maybe even 2!

don48312 -- 2 for sure

billeric -- Thank you very much, Dr. LaSpada

jean -- I spend a barrel!!

don48312 -- bye all

don48312 -- {goodbye don48312}

butch -- So long for now. Hope everyone has a happy holiday season. Stay healthy and strong.

billeric -- Happy Holidays, folks. Enjoy. Bye

billeric -- {goodbye billeric}

susannew -- Happy Holidays to everyone!

jean -- So long, wish nice Christmas and happy new year, Bye


End Chat