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Kennedy's Disease Chat Transcript 05-6-2006
Topic: Special Guest - Alison La Pean
Host: Murray Williams
Murf: Morning gents
MICH: Good Morning Murf!
Murf: Did you get any storms last night?
ORRON entered the room.
Murf: Morning Orron. do you have KD?
MICH: How's the weather In Texas? No storms here, just a few sprinkles for the next few weeks, then the heat comes!
Murf: Big storms today here. we're under tornato watch
billeric entered the room.
MICH: ORRON, what part of Oregon are you in, I lived there for 25 years?
Dart! has left the room.
Murf: I just bought a battery back up so should be ok for today
billeric: Good morning you early birds!
Murf: Morning Eric
MICH: Good Morning Bill!
craig_h entered the room.
Murf: Morning Craig
craig_h: good morning y'all
Alison entered the room.
Murf: Morning Alison!!
Alison: Good morning!
craig_h: wow, I was just in-time to escort Alison into the room !!!
Alison: Well, I certainly appreciate it.
ORRON: Murf & MICH: Yes, I have KD, diagnosed in '01. Live in eastern OR....300 mi. from Portland.
Murf: LOL Thanks Craig
craig_h: I even held the door
Murf: Orron are you signed up for the clinical trial?
fl-don entered the room.
craig_h: Alison, had a busy week ?
fl-don: gm all
Murf: Alison - 9:30 I will introduce you and then we take ?s
Alison: Smile. Absolutely. But a good one. You all have made the week a joy.
MICH: ORRON, are you anywhere by the Coast or south of Medford?
Alison: Sounds like a plan.
Norman entered the room.
fl-don: i'm awaiting your call alison
Murf: Morning Don & Norman
Dart! entered the room.
Murf: Norman - where in Canada are you from?
Murf: Welcome back Dart
Norman: Hi . Im from Quebec
Norman: First timer.
Alison: I know. I should probably begin this session with a phone call disclaimer. Everyone who has called is in a line up and I just go through that every day until I've spoken with everyone. I'm sorry if it has taken a while.
craig_h: we will be gentle Norman ............... lol
Alison: This is my first time in a chat room, ever, actually.
fl-don: np, just dont know if ive done everything i need to do
Murf: Your doing great!
Norman: So how does this work. Is it a Q&A session?
kellyC_ entered the room.
Murf: Morning Kelly
kellyC_: good morning
Michael17860 entered the room.
Murf: Norman - I will intro Alison at 09:30 then we can start
kellyC_: hi alison how are you?
Dart!: Thanks Murf, and greetings all. . There was no one here yet, so I took a walk to another site. This looks to be another good chat!
Alison: Good. How about yourself?
Murf: Is that you TJ?
Duane entered the room.
ORRON: Murf & MICH: Yes, signed up for the clinical trial. We're not near OR coast...live about 100 mi. from Idaho.
kellyC_: lotsa cramps last night darn legs and arms
Michael17860: hI ALL
Murf: Morning Duane
Duane: hello all
Murf: Kelly Alison La Pean is our guest on the KDA chat today. Questions will be taken after a short bio.
kellyC_: yah ok i know thank you murf
Gary_KS entered the room.
Murf: Alison La Pean received a Bachelor’s of Science degree in Zoology-pre medicine from North Dakota State University in Fargo, North Dakota and a Master’s of Science degree in genetic counseling from Northwestern University in Chicago, Illinois. She worked previously in a biochemistry laboratory at the University of Wisconsin-Madison and at the Stem Cell Institute of the University of Minnesota-Twin Cities.
Murf: She has also rotated through a number of medical centers in Chicago, IL; Evanston, IL; and Milwaukee, WI and has also worked as a telephone crisis counselor for the Fargo/Moorhead area. Alison is currently working as a genetic counselor for Dr. Kenneth Fischbeck’s group at the Neurogenetics Branch of NINDS at the National Institutes of Health (NIH) in Bethesda, Maryland.
emeyerth entered the room.
Gary_KS: Good morning, Gary Uchiyama joinded from Kansas City.
emeyerth: Good Morning
Murf: Dr. Fischbeck’s group is particularly interested in hereditary neurological and neuromuscular diseases. Alison’s roles at the NIH include providing genetic counseling to patients seen in clinic and working as a protocol coordinator for current and upcoming research studies.
emeyerth: Ed Meyertholen here
MikeG entered the room.
Murf: Additionally, she is a rotation supervisor for the Johns Hopkins/NIH genetic counseling training program, a co-chair for the Neurogenetics special interest group of the National Society of Genetic Counselor and generally a great lady. Please welcome Alison La Pean.
Alison: Hello Everyone!
craig_h: wow, a young lady is the guest and look at the guys flood into the room ......
Murf: Morning Ed & Mike
Alison: Your sense of humor is fantastic.
MikeG: hi Murf
emeyerth: hello, Murf
Alison: Is everyone just taking it easy on me? :)
Murf: I can hear the questions coming...
craig_h: Alison, are you close to the 50 patients yet?
MikeG: enjoy the silence why u can...
Alison: Not yet. There are still plenty of slots left.
Alison: As I am sure you all know, I have been making call-backs this week.
Alison: I am only about halfway through the list (so I apologize if some of you have been waiting a while)
kellyC_: have you sent out the letter of recrutment yet?? alosn
Alison: We are not quite half full yet.
Murf: Is there only 24 hours in your day too??//1
Alison: Yes, the letters did go out. I would certainly like to know if I missed anyone. I can get emails and send letters electronically & via post.
Duane: do you need 50 recruits before scheduling patient visits to MD?
billeric: Question Alison, How long have w e got to get the requested info to you for the study. I have had the differnt tests done at a bunch of places and I know it will take some time to round it up?
Alison: Wait...there are 24 hours??
kellyC_: actually I havent gotten mine yet?
fl-don: what specific letters are we talking about???
Alison: I heard that the letters to (Canada?? If I remember correctly) just got in yesterday...yours may still be coming
Alison: As for the tests:
kellyC_: OOO ok alison ty
Norman: Yes I can confirm that. I got mine yesterday
Dart!: Good morning Alison - our group would be a study in itself. Neuropathies tend to run in a family, don't they? Five in my family, and possibly more, but those died before the disease became known.
Alison: While making my calls, I go through a participation checklist. If everything is fine, and you qualify to participate, the only thing I need THEN AND THERE to schedule you for an appointment is a copy of your genetic test results.
MikeG: That sounds like my famile Dart. Are you related to the Sextons?
craig_h: Alison, what is the thinking on the drug? Would you think it would be noticable in days? weeks? months? (assuming we don't get the dreaded placebo)
Alison: The rest of the information can be sent in at your convenience.
Norman: Is there a deadline to get the genetics results to you?
Alison: Dart!, I am so sorry to hear that.
Alison: Re: the medication.
Alison: We actally do not know. This is really the first study of its kind.
fl-don has left the room.
Alison: We do not know what, if any, effect the drug will have on stopping the progression of symptoms or reversing the symptoms. That is what our trial is looking at.
Dart!: I know naught of the letters of which you speak. But it might come out in the 'chat', so I will be patient. No, Mike, I don't know anything abut the Sextons, either.I would be willing to learn, though.
craig_h: so, I should cancel my plan to hike home ?
Michael17860 has left the room.
MikeG: How long will the trial last?
Charles entered the room.
Alison: The letters are recruitment and informational letters that were sent out to give information about the trial so that you could decide if you qualify or if you want to participate.
Alison: Criag: It might be a long haul... :)
Alison: The trial will last for 2 years (actually, about 2.5 once we get everyone through for their final appointment).
Dart!: I appreciate your kindness, Allison - that is a rare traite these days, but I am OK - lots of people worse off!
Alison: Re: how long to get me the information.
kellyC_: so once all said and done, with the selected? when will it actually start mid summer or fall??
Murf: My first appointment is June 20 & 21
MICH: What city is the trials taking place?
Alison: The genetic test result should come ASAP. Unfortunately, who ever meets the criteria and gets me the result will get a space before those who do not have their results to me. So, I guess you have until we fill up. The rest of the information can come at your convenience.
Murf: I don't plan on running home though.//2
MikeG: How long after the 2.5 years should we expect before the results are released?
Alison: The first patient will walk through our doors in 2 WEEKS!!! I can't believe it. May 22 is the start date.
Alison: The trial is held in Bethesda, Maryland. Just outside of Washington DC
craig_h: wow, I'm early then .... May 31 & June 1 for me
Dart!: 'Running home', huh Murf? Me too - that is why I am
Duane: I fell two weeks ago and cracked a rib...plus a few scrapes...guess I was lucky. I'm ready to be a guinea pig :)
doughboy entered the room.
Alison: We will try to be gentle. :)
Murf: Dart - you may have to pack a lunch. LOL
Alison: I am sorry to hear that you fell. Are you doing OK now?
doughboy: good morning everyone
Duane: Yes..just sore.
kellyC_: so how many canadians have you got alson? more than americans ?
Murf: Morning TJ
Alison: I'm sure. Glad to hear you are OK, though.
kz entered the room.
Murf: Careful Kelly
Dart!: Right, Murf! I am slated to see the head honcho of Neuropathies in Calgary this month, so we will see what he has to say.
kellyC_: LOL ok murf lol my fellow american lol
Alison: No, we are definately American-biased. Mainly because there weren't actually that many Canadians who contacted me to get the letter. Maybe under 10...
Murf: I'm both
kellyC_: ic ic.... ok
Alison: You can certainly feel free to pass along the information to whomever is interested.
JoeK entered the room.
doughboy: They are all here in America, right Murf! LOL
craig_h: we are sending the Arizona civilian militia to close the nothern border ..................<
doughboy: HA Good One!
Alison: They will have a long hike.
Duane: Should we fax our DNA test results to you while waiting for a callback?
Alison: Sure. That would make things run faster when I call. 301-480-0056
doughboy: Alison, Mr. Noack here, how are you doing and what are we discussing today?
Murf: Morning KZ & Joe
Alison: Hello Mr. Noack! How are you this morning? We are discussing the trial right now.
doughboy: That the fax #?
Alison: I did get your email and I have been waiting to speak with Sharu before responding.
Alison: Yes, that is the fax number.
kz: Hi everyone. Kent Zittel on board for the first time.
kellyC_: hi kz where u from? you have kd?
Murf: Hi Kent do you have KD?
doughboy: No problem, I fiqured you had everything, however I did have a new blood work up a couple of months ago maybe you need it.
Alison: Sounds great.
Alison: Hi Kent.
doughboy: Very g ood, I'll fax it monday
kz: Yes, was diagnosed 2001
Norman: Alison, one of the criterias in the letter is that elevated liver enzymes will exclude someone from the study. I fall under that condition, however it is being controlled by medication. Would that exclude me? It would save me some time and energy in collecting the documents if there is no chance of me getting in.
Murf: Welcome to the club LOL
kz: Hi Alison
TerryW entered the room.
Radionet entered the room.
Murf: Morning Terry & Radionet
Alison: I would have to ask Sharu (Dr. Chen). The liver enzymes can be slightly elevated, just not 1.5 times the upper limits of normal. Are they elevated due to liver disease?
kellyC_: did u sleep in terry lol
craig_h: Alison, for the placebo group, do you think if the study is a success, they might get free samples for awhile ?
Dart!: Does DNA tell all about this 'disease'? Perhaps I could get the facts from my Neuropathy visit and send them to you?
Norman: Yes due to hepB.
Murf: Craig I like that
MICH: Would fatty liver exclude someone from the study?
Alison: I do not think that free samples will be available after the trial. However, the drug is already FDA approved, so it would be very easy to get a prescription from your local physician, provided we found convincing data to suggest the drug is beneficial.
doughboy: Alison, what if you have type two Diabetes, would that be grounds for exclusion? Hey Mich, I have one also!
craig_h: even though I am allergic to placebo's I think I would tolerate it better if we got the real stuff later
Murf: I think I just have a fatty
Alison: I don't think type II diabetes would exclude you. I will be double checking with Dr. Chen, but I don't think it will be a problem
doughboy: Thank you
Alison: I will also have to check on HepB. That might be a bit more problematic, since the liver enzymes will be elevated.
Alison: Yes, many are claiming allergy to placebo.
kellyC_: what kind of allergy's to placebo???
doughboy: Alison, how many have been approved for the study so far, if you know?
MICH has left the room.
doughboy: Good morning, Terry
Norman: So would it be worth my effort to gather the documents? My liver enzyemes are no longer elevated due to meds i am taking now. But would that cause a problem?
Alison: doughboy: a little under half needed have been approved/qualify to participate (about 23). Remember, that the first portion of the study is screening tests, so some that have qualified may "screen out" if their blood work is off. However, provided everything is within normal limits, they can continue. For that reason, I will also need a back-up list.
doughboy: Murf, did you have a storm through your place this morning!
Alison: KellyC: I wasn't sure if some were serious about the allergy to placebo... Most were joking, so if there is someone with a concern, please let me know.
kellyC_: ok ty
Murf: TJ - big one and still under the tornato watch
TerryW: I just dropped in to see who was here. I am going to go lay back down. See ya all
Alison: Thanks for joining.
Murf: Take care Terry
TerryW has left the room.
doughboy: Okay, well I will fax you my paperwork Monday, along with my lastest full blown blood work! By the way, if you didn't know doughboy, is Mr. T J Noack
kellyC_: whatr happens to the pple who cant tolerate the side effect from the drug dusteride are they. expelled from the study??
Norman: ok thanks.
Dart!: When I see my Neuropathy specialist, what specifically should I ask for in the line of information, that would be of interest to the 'study'?
kz: Alison, the hopes are that this drug test will show an increased in general muscle strength. Does the strength building cease when the drug is no longer taken? Is this a drug that would be daily for the rest of our lives?
Charles: Hi Allison (this is Anna Lea for Charlie). Will you continue with this study should you not reach 50 participants??
Alison: KellyC_: generally the side effects of dutasteride are quite mild and occur in a small portion of the patients. They include possible breast tissue enlargement (<6% of the time and lower after 1 year) and possible sexual side effects (also <5% of patients, and <2% the following year).
kellyC_: ooo ok alson ty..
Radionet: Alison, I haven't received an email from you saying to expect a letter. Can stilI expect it or have I possibly got missed?
doughboy: Alison, If I'm correct, the drug study is based on lowering our Testosterone. If it does that, we will have less energy, if I understand what testosterone does. My testosterone level is already only 154, which is low. Am I correct in this?
Radionet: Sorry have not haven't
Murf: Sexual side effects !!!! great I forgot what that was! LOL//2
Alison: Dart!: I forgot, did you get the recruitment letter? If not, email me at work and I will send you a copy. Take that to your physician and it lists the specific tests we are intersted in. Some blood work, EMG, EKG, etc. But you do not have to get these things done if you have not already had them done.
Alison: Hello Anna Lea and Charles!! It is good to hear from you. Great weather today, yes?
craig_h: Alison, I've talked to several other people from here that have been to NIH. Are we going into one of the areas that they search cars and all that?
doughboy: It's like ft. Knox
Charles: Yes Allison - beautiful weather. I am going to walk the Bay Bridge tomorrow...
Alison: It is like ff. Knox. Yes, you will need ID, and you and your car will be searched. Plan on it taking about 15-20 minutes.
Alison: As for the testosterone,
doughboy: Please go ahead if you know, Alison
JoeK has left the room.
Alison: low energy has not been a reported side effect. I can ask Dr. Chen. I would presume that it would not a good idea to give a medication in the hopes of increased activity and muscle strength that had a side effect of low energy. That would definately be a "confounding factor" for our data, meaning that it would not be as accurate as we would hope.
doughboy: So as far as you know it doesn't lower our testosterone
JoeK entered the room.
Alison: For that reason, I do not think think it would have that effect. It is certainly not in the list of side effects we are reporting as concerns to the participants. And we are very clear on that.
Murf: welcome back Joe
MICH entered the room.
Alison: No, as far as I know it shouldn't lower your energy.
craig_h: Murph, for the side effect that you was excited about, you hoping it's a good effect? lol
doughboy: Okay, oy the way ya'll, I joined the half century group yesterday
Alison: It is actually lowering your dihydrotestosterone.
MICH: Sorry, someone in our neighborhood must have knocked a power pole down...lost power to house!
doughboy: What's that
Murf: Craig - me too//4
Alison: Happy birthday!
Radionet: Alison can I still expect a recruitment letter, I haven't received one yet? Your email said I could expect it about a week ago?
Murf: Happy B day TJ - let me know
doughboy: What's dihydrotestosterone
Alison: The androgen receptor is the receptor that "needs help", in a way, in patients with KD.
coak entered the room.
Murf: Morning John
Alison: Both testosterone and dihydrotestosterone (DHT) bind to the androgen receptor, but DHT binds "better."
coak: Hello everyone,
doughboy: The new drug is supposed to help our motor neurons from deteriating, is that correct?
coak: Better never than late.
Murf: forget to set your clock back? LOL
kz: Hey John, nice add in Quest mag last month1
craig_h: re-reads what coak said, huh?
coak: Thx, KZ
Radionet: Blizzards over yahoo!
Alison: We are hoping that it will have a protective effect on motor neurons, yes, and therefore muscle strength. But that is what we are trying to find out with this study.
Murf: Page 62 in this months Quest Mag - The Liberty Cane. This is Johns new cane.
Murf: I found it
craig_h: Alison, should we dress casually? some sort of wrok out clothing ?
doughboy: My wife just had a full hystorectomy monday and I brought her home thursday evening, I have to go help her now, so I'll talk to you all later. Alison, thanks so much for sharing your morning with us. Take care! Hope to see you soon!
Alison: Fantastic about the liberty cane!
coak: Bye TJ
Alison: Thanks, Mr. Noack! Best wishes to your wife.
Murf: Take care TJ call me if you get a chance later
ORRON has left the room.
coak: Thank you for the kudos.
doughboy has left the room.
Alison: Craig: Yes. No need to dress up just for us. We will have you try some things that are active, so it is best to be comfortable.
Alison: I was emailed that lovely article, too, about the L.cane. Wonderful news.
coak has left the room.
Murf: Works great I got one
Gary_KS has left the room.
Radionet: Can you see this note? I haven't been getting any response to my question!
Alison: Yes. I can see. I'm sorry, I will go back and look. What was your question again?
Murf: Yes - sorry radionet
Alison: Radionet: re: the letter. Are you in Canada or the US?
Murf: Hows the weather up there? My parents live in Winnipeg
JoeK: what is the lib.cane?
kellyC_: nice here in saskatoon sk finally lol
coak entered the room.
Duane: Will wheelchairs be available at NIH clinic for persons needing them?
craig_h: oh, Alison, once the trail starts, should we refrain from discussing it in here? Like it might mentally sway a person?
emeyerth has left the room.
Murf: Northern Manitoba
emeyerth entered the room.
Radionet: For now
Radionet: Thanks, Alison
Alison: Yes, wheelchairs will be available at the NIH for those needing them.
Murf: Radionet - are you in Thompson?
MICH: Are powerchairs available too?
Radionet: I'm in Churchill
Alison: You know, I'm not sure if you should refrain from discussing it here...
coak: Alison: this was great of you to assist us this morning.
Murf: The polarbear capital of the world!
Dart!: Sorry - tell me again 'what / where is NIH?'
Radionet: You bet!
Alison: I know that it is usually a request for other trials, since they have to do some "home evaluations." But I am not sure about this trial.
coak: National Institutes of Health in Bethesda, Maryland
Radionet: Where are you murf
Murf: Houston TX but as a Canadian lived all over Canada til 1996
Radionet: I see
Alison: Dart: The NIH stands for National Institutes of Health and it is located in Bethesda, Maryland just outside of Washington DC. It is a government funded medical research facility and included many different institutes (NCI, cancer; NEI, eye). I am part of NINDS, national institutes of neurological disorders and stroke.
Murf: It's a lot warmer here
craig_h: and if we all show up with roses for Alison, will security confiscate them?
Norman: Alison, are you recruiting people based on what stage of the disease they are at? For example, do you want some in advanced stages and some in earlier stages.
Radionet: just a little lol
Alison: I don't know...the thornes are rather pointy. Could be used as a weapon... :)
coak: FYI: the NIH has additional security that will take up about 7-10 extra minutes for you/your car/cab to get through -- don't forget to allow for that extra time when arriving at NIH.
kz: After taking a number of falls over the last few years, I was talked into seeing a Chiropractor. What a difference she has made on my walking. Come to find out that even the little falls really did a number on my hip alignment. After 3 visits, I can get up out of chairs without spreading my legs way out to compensate. my endurance has increased also.
Murf: I have to watch for tornatos and hurricanes now
craig_h: ok guys, de-thorne the roses
coak: Murf: TIME almost up.
Radionet: I was jsut diagnosed and am not on any meds or have any known medical conditions. So am pretty excited about possibly participating
Alison: Ah! tornadoes and hurricanes. I don't know about you, but at least it isn't earthquakes.
Murf: 3 minute waning!!
kellyC_: Well Alison it was nice meeting you hopefully I:LL see u in person soon bye all untill next chat!
MikeG: I've gotta go. Thank you so much for your time, Alison - you've been very helpful. Bye everyone.
Alison: Fantastic. It sounds like you would be a great candidate. I look forward to speaking with you.
billeric: Thanks Alison. We do appreciate your time
Alison: Thank you all very much. It was a pleasure.
emeyerth: Thanks for coming, Alison, and I will meet you in June.
craig_h: Alison, thanks so much for today. Your cheerful attitude is wonderful. And thanks for what you are doing for all of us
Charles: Thanks from WV Allison......
MikeG has left the room.
Norman: Thanks Alison. Hope to meet you soon.
kellyC_ has left the room.
kz: Allison,See you in July, (Kent Z)
Radionet: Thanks Alison an dall!
emeyerth has left the room.
coak: Bye all
kz has left the room.
coak has left the room.
Norman has left the room.
Charles has left the room.
Duane has left the room.
Murf: we The official chat is now over. I would like to thank Alison for taking the time to join us today, we had a great turnout. If you would like to stay on, ya’ll can chat as long as you like.
Dart!: Thanks Allison - I have been introduced to 'Ninds' through the internet. What a lovely job you have, to watch helplessly, so far, as people deteriorate. That sounds a tad cynical, I know, but as Dr. Phil says "What is, IS!" And I thank you as well, for your concern!
JoeK has left the room.
MICH: Yes, Thank you Alison...my Mom went to NW as well as grandfather
Alison: Thank you. Hopefully this trial will help those with KD. I certainly know it is our hope.
Murf: Thanks Alison this was a great chat
billeric has left the room.
Alison: GO Widlcats!
Alison: Thanks so much. Take care! Bye.
craig_h: Murf, see how the attendence grows with a female host? Can we get Jessica Alba next time ?
Murf: Thanks and Take care
Alison has left the room.
Radionet has left the room.
Murf: I'll try but no garranteesEND CHAT